History

Wednesday, July 1, 2020 7:31 AM CDT

Hello! So we have been home a week. Mitchell is really doing well! Yesterday we forgot a dose of meds and he seemed ok so instead of giving it at the time I just waited until the next dose was due. He has taken something every 3 hours so meds overlap. He was fine. So, last night I decided to give him his ibuprofen at 10 like usual and then just let him be. I have been setting my alarm to wake him up every night at 1 and 4 for meds. He did pretty well. He slightly wakes up when he changes positions but he didn’t seem to wake up due to pain. He slightly woke up around 4 so I gave him a dose then. So that was 6 hours from his last dose. I will be playing with that a little the next few days to see if we can cut back on some meds.

He’s moving around a lot more comfortably. He’s more stable on his feet as well. He even is starting to try and figure out how to grab things from a low table. He’s starting to realize that he has to bend his knees and squat to get things. I love that he’s trying vs yelling at us to get it for him. He has been pretty cautious about how he moves so far. This is encouraging as it shows he feels pain when he moves the wrong way which is important. I have had him put his shell on when he goes for a longer walk just for some stability but have let him roam freely without it at home. As he feels better he might have to wear it more but it’s so hot and uncomfortable. It’ll mainly depend on how he treats his body throughout recovery.

We went for a little car ride the other day. He was happy to get out of the house. We went to pick Sam up from hockey. Mitchell saw a few friends in the parking lot and was able to wave and say, “hi”. He loved this! He has been so sheltered because of covid and his surgery. The kid is craving social interaction. Hopefully this helps get him in the car more as we’d like to work towards being able to get him back to the cabin. But, that’s a 1 ½ hour car ride...so small steps.

Thanks again for all the support! I’m so happy we are on this side of this journey. I’m so thankful we got in and out of the hospital during the low covid point as I feel our numbers will be going up soon again.

Wednesday, July 1, 2020 7:31 AM CDT

Thursday, June 25, 2020 7:58 PM CDT

Sorry updates have been few and far between. Busy busy busy around here.
We got home Tuesday and like I said Mitchell was happy to be home but in a good amount of pain from the ride. His night wasn’t great either but he got some oxy and then he slept well for a couple hours. Wednesday he ended up pretty good in the morning and then he really got angry in the afternoon. He was just mad. I don’t blame him. His life is completely different in how he moves and that’s tough. He kept saying “I feel different” and everything was thumbs down. I keep reminding him that he will get use to his new back and he will be ok. The pain won’t last and every day will be better. It was a tough day. The night was actually ok. He still woke up but it was more for position change vs pain. We had a little struggle at 1 he decided he was done taking his meds. Again, I don’t blame him. He’s on medication every 3 hours. That gets old. He’s tired of swallowing pills and getting woke up. I let him be in control of his oxy. (Haha ok not really but he can decide if he needs it) I think he likes that. He decided he didn’t need it last night.
Today was a very different day. He woke up happy and just his overall demeanor was way better. He wasn’t so angry. He smiled a lot, laughed and joked with us and his brothers. He wore his turtle shell with little fight realizing that was his ticket to freedom. Haha. He is MUCH more steady on his feet today. Enough where I think if he has his shell on he is ok to move around the house (minus steps). He still needs to be watched pretty closely. He can’t sit or stand on his own which means the bathroom as well. He can however get himself out of bed! This is a huge accomplishment and scares the crap out of me but is so great for him. He still struggles with getting himself into bed. I have no idea when I’ll be able to get back to my own room. I suppose when he’s safe getting in and out of bed. If you wonder what it’s like try getting onto bed without moving your torso at all. So sad how much we take for granted. He can do stairs but I wouldn’t call them safe right now. (He says that it hurts) Today he seemed at peace. It was so great to see. He helped me more when he was getting in and out of chairs. He’s trying to learn. He was able to hop on a google meet with his classmates today and he loved that. He’s been so crabby about laying in a bed for days. Today he was out of the bed most of the day. I actually told him he had to go lay down and rest for a bit. He razzed his brothers. He has figured out that they can’t touch him so he razzes them hard. Haha. He also has figured out he can’t pick up anything yet so if he throws something someone else has to pick it up for him. Haha. Stinker. He’s just in a better place today. His body seemed relaxed. I pray for a good night.
One thing I have to say is he has handled this so well as far as his breathing. I was very nervous about what his breathing would be like with this much pain. As a younger kid there is no doubt he would’ve stopped breathing with this kind of pain. He has handled the drugs well. That said he hasn’t really needed a ton of oxy but when he has gotten it he has done ok. He knows deep breathing helps and there are times I catch him trying to take deep breaths.
So, things are going better. He will have good days and bad and that’s ok. I think we are over the hill. Again, thank you for the prayer, gifts, meals, cards. They are all appreciated. Know that the smiles we got on Tuesday and Wednesday were all because of friends that have reached out with a card, a video, a gift, card...those pictures on Facebook or instagram that he’s smiling in, that’s because someone showed him that he can do this. So thank you. Thank you for making him smile.

Thursday, June 25, 2020 7:58 PM CDT

Tuesday, June 23, 2020 8:40 PM CDT

We are home! I can’t say it was easy but we made it. Mitchell ended up feeling pretty tough by the time we got home. I was able to get his pain under control but ugh that wasn’t fun.
It’s much harder at home as there are more ways to hurt himself. His surgeon decided that he needed a brace to help keep him from hurting himself accidentally. She is very concerned that he doesn’t feel pain like a typical teen that just had back surgery. She afraid that he won’t be able to feel that he isn’t suppose to move a certain way. So, we will use a brace most times when he’s around...especially when he’s starting to feel better. It’s nice to be home. This week will be hard. It’ll be hard for everyone. But, each day will be better. Each night will be better. Please pray for peace for Mitchell. He’s just realizing that he won’t be the same. I think once he gets use to his new trunk he will be ok but for right now he’s just sad and upset. He just wants to feel normal again. I can’t blame him.
Again, thank you for the thoughts and prayers. Thank you for the cards and gifts. Know that each message brings Mitchell a smile and I love seeing that.

Tuesday, June 23, 2020 8:40 PM CDT

Monday, June 22, 2020 9:30 AM CDT

Good morning! We made it through the weekend! Side note...I don’t think I’d do this again on a Friday. For many reasons. Nothing major just something for me to put in the back of my mind for next time. (One reason is there are no coffee shops open in the hospital! The struggle is real haha)

Mitchell continues to do really well. He’s walking a little bit more stable, has done stairs now and was able to sit on the toilet! Woohoo! All small steps towards recovery. He does really well moving. Still needs a lot of help but he also is helping and learning. It’ll be awhile before he can move around without assistance.

We are still figuring out his pain. He’s such a tough kid, he doesn’t feel like he needs pain meds. I can tell he isn’t always telling the truth with how much pain he feels. It seems like he wants to not be a bother or that it’s a wrong answer to say he’s in pain. Yesterday we just gave him oxy just because he seemed uncomfortable and he clearly needed it. He seemed a lot better after that. This morning they had him up and transported him to do a standing X-ray and then back up and went walking, sat on the toilet and sat up in his chair to try and eat. Ya that probably was a little much. But, he was able to say he was thumbs down. (Which is great!) Gave him some oxy and now he’s just resting. So with more movement he might need a little extra pain help.

Our surgeon will visit later today and talk about the going home plan. I believe the plan is tomorrow. It’ll depend on if they can get everything together in order for us to leave before noon. I don’t want to have to leave in the afternoon just because of the distance we have to drive and I know I’ll be tired in the afternoon. So it sounds like they are working towards getting that stuff in order.

Yesterday he had a slight temp but I don’t think we’ve seen that today. Sometimes it’s the body’s natural reaction to the trauma it’s had. His dr is going to get a brace for him just because he isn’t really understanding the ways he can’t move and she’s worried he’s going to hurt himself. Pair that with not feeling pain like the average patient and yikes. So, they are working on that today. It’ll be a soft brace that he can wear when he’s walking around.

I can’t promise I’ll be on again tonight but maybe I’ll try once I talk to his surgeon. I’d also love to try and upload the full X-ray so you can see. That might have to wait until I can get onto a computer at home. Thanks for the thoughts and prayers!

Monday, June 22, 2020 9:30 AM CDT

Sunday, June 21, 2020 11:41 AM CDT

Good morning! We’ve already had a very busy day! Mitchell had a pretty good night. Up a little more than the night before but that was to be expected as pain meds and anesthesia wore off. We seem to be keeping ahead of the pain so that’s good. I have heard from other parents that day 3 generally is the hardest and so far they’ve been right. He’s done great but just a few hurdles already this morning.
He got his back drains out this morning as well as his catheter. Both went ok. After sitting up for awhile we noticed that his drain hole was really oozing a lot. Seemed maybe a little more than normal but orthopedic wasn’t overly concerned. We will watch that. He ate breakfast but then threw it up. Bummer. So that’s kind of a step back but very common. We will go a little slower and stick with the applesauce.
He got up and walked all the way to the steps on the floor and back. I would say maybe 20 feet there and back so yeah! He did really well walking slowly. His walk already seems a little smoother, still rocks back and forth but that might just be the way he is. He just has to learn his new trunk and how it moves and doesn’t move. After the walk he sat up for a bit but then got pretty sick and got back into bed. Pretty big morning for him. That was all before 10. We took a rest and will probably try to do it again this afternoon.
He’s getting a little bossier. I see this as good. He’s sad. He wants to be done and be home. But then he turns around and says he’s happy. So, lots of different emotions. He’s feeling uncomfortable with all the help he needs. He keeps saying sorry to the nurses. I keep telling him that’s their job...that’s what they are here for.
I would think that we might be going home Tuesday if he can start keeping food down. Today we will go light and then maybe slowly add tomorrow. His surgeon is also talking about getting him a generic brace because he doesn’t seem to feel the normal pain you or I would feel, she’s concerned he is too comfortable. Once we get home she’s concerned he might try and move in ways he shouldn’t.
Slowly we will get there. It’s just going to take time and each day should get better. Thank you for your thoughts and prayers. We appreciate them! Oh and Happy Father’s Day to all of the fathers out there!

Sunday, June 21, 2020 11:41 AM CDT

Saturday, June 20, 2020 7:24 AM CDT

Good morning! It was a long day yesterday but all in all it went well and surgery appears to be successful. The surgeon had to fuse from T2-L4 which is pretty much most of his back. He had a large curve and a good amount of rotation towards the bottom which is why she decided to go down to L4 vs L3. He will still have his hip movement so he can bend over at his hips.
Coming out of surgery he wasn’t nearly as puffy as we were expecting which is great. He sounded awful. Like his throat and chest was full of fluid. This isn’t abnormal coming out of surgery..typically a couple good coughs and he’s fine. It took a little longer just because he was still pretty drugged up. But, we got him cleared. He had a chest X-ray last night just in case. I think the added gurgle concerned the surgeon. (Rightfully so)
Of course the big thing is that he can move his limbs. This can be scary and I feel they were briefly concerned at first but after a bit he “wiggled” everything. He really isn’t able to wiggle his toes normally (hahaha) sooooo when I said what he was doing was baseline they certainly perked up. Everything is moving the way it should. So that’s great.
Last night before bed they had him sit up and dangle his legs from the bed. He needed 100% assistance but that’s a start. PT will come today and his goal is to get out of bed and walk to the chair 2 times. If he can do that they’ll probably move him to the less floor instead of PICU. Mainly he is in ICU because of his breathing history.
Pain seems managed. He is a tough tough kid so it’s super hard to gauge where he’s at. He has 2 pain ratings 0 and 10. So, it’s a balance of just guessing that he needs something before he hits a 10.
Mitchell will also get to start eating today. They’ll start him slow and move on. I’m sure this will go quickly. Ha. He isn’t a kid that gets nauseous from meds or anesthesia so I really am not concerned about that. (Which is why they hold off on food)
The nurses keep commenting on how awesome he is and how great he’s doing. He’s a very adaptable kid, he’s had to adapt his entire life so he will do the same with this I’m sure. He got to FaceTime his brothers and grandma last night and that really made him happy. Today will be filled with just healing.
Paul and I got some sleep last night. He went back to the hotel and I was able to stay in the parent sleep room. It’s a little bedroom and bathroom right down the hall from Mitchell’s room. It’s so great. It’s nice to sleep out of his room but also knowing I’m just down the hall if he needs me. He was 1-1 with a nurse last night so he was being well cared for.
I’ll try to update again tonight with how his goals went. Thank you for the love and support. We appreciate all the messages and videos and prayers.

Saturday, June 20, 2020 7:24 AM CDT

Thursday, June 18, 2020 5:36 PM CDT

Busy busy day today. 10-4 we had appointments...yikes.

Xrays. Yep he still has scoliosis. Haha. Basically the same as it was last time. His curve is around 62 degrees. We did another X-ray on the way out because she wanted to look at how far down she needed to go and the earlier X-ray just didn’t show. She’s hoping to only go to L3 but she might have to go to L4. Basically it’ll be most of his back.

Dr.Larson (the surgeon) always amazes me at her calm approach to things. Maybe that’s why she’s the surgeon and not me. Ha. They’ll monitor his nerves throughout surgery and they will help guide her in how straight she can get him. If they can’t get a good reading they may have to cancel or she will stop and we will discuss options. Typically this isn’t an issue. But, it’s nice to know she doesn’t push it. She said surgery is usually 6ish hours. I was shocked I was expecting 8-10. Yeah! Of course it can always go longer. She said getting him prepped takes awhile especially now with extra covid precautions. Also his ENT will place the et tube so maybe that’ll take longer than the average intubation. He will be in the PICU the first night and then moved to a room the next day. First day (Friday) will be for rest. They might have him sit up and dangle his legs. Second day they will try and get him up and moving. Minimum time in the hospital 3 nights. It really just depends on how he does.

Oh covid. So. It appears his antibody test wasn’t negative or positive. It was inconclusive. So there’s that. What that means nobody really knows. It can mean a number of things. A few weeks ago Mayo would’ve cancelled his surgery but they don’t cancel it anymore if your main covid test is negative.

Mitchell met with child life as well. This was meh. He’s been through so much he really could be a child life specialist himself. Haha. That said, it was helpful for him to hear her talk about the different types of pain and to remember that he has to move even though he won’t want to.

We met with anesthesia as well. Again, he’s had so many procedures there wasn’t a ton new here. It was basically updating his med list and talking about pain management.

His last appointment was a photo shoot. Haha. Mayo loves their pictures. This was of his back in all different directions. But. It was in his underwear. Haha. Who would’ve thought he could add underwear model to his list of things he’s done?! The look on Mitchell’s face made my week. We laughed with every single picture. Even the photographer was chuckling.

All in all we are ready. Mayo has a way of re-ensuring that they will do all they can to make this a successful surgery. Mitchell feels so loved when he sees all of your messages and videos. He loves them. He loves knowing that so many people are praying for him. He said that it makes him feel better. In the last 2 days both of us have gone from feeling pretty anxious to feeling good. It’s going to be hard but we’ve done hard before. He will do great.

I will update at some point tomorrow. He should get out mid afternoon. If I get an update throughout I may swing on and post something. I should for sure have something tomorrow night.

Thursday, June 18, 2020 5:36 PM CDT

Wednesday, June 17, 2020 4:37 PM CDT

Not a ton new today but a few things.

Echo. We did an echo because Mitchell does have some abnormalities they watch every 3-5 years. Being we had this big surgery I thought we should just double check. It’s fine, unchanged so that’s good.

Covid. No results on the actual covid test yet, that could take awhile depending on how many covid tests have been done in the state.
Covid antibody test came back negative. Bummer. The only reason I thought maybe it would come back pos is because he had an awful cough end of February.

That’s really it for today. He will get X-rays tomorrow, meet with surgeon, meet with child life, And meet with pain management.

Mayo was great. We had to check in and get a Wednesday sticker saying we had gotten checked. Everyone wore masks. It was great.

Wednesday, June 17, 2020 4:37 PM CDT

Friday, June 12, 2020 5:10 PM CDT

Firing up this baby! It’s been awhile but as I hear...”let me know how surgery goes.” I’m slowly realizing that maybe this is the time to fire this bad boy up again.
Funny as I read my last entry. 8 years old huh? So 7 years later. If you read that entry I talked about Mitchell’s scoliosis and probably needing surgery. Well. Here it is. We bought 7 years. Pretty darn good if you ask me. His chiropractor was huge in making that possible. We are so fortunate to have found him.

So. Yes Mitchell is scheduled for fusion surgery in a week. I’m not going to sugar coat it. It’s going to be tough. It’s going to hurt and it’s going to be a long long surgery. I don’t think it’ll be as long as his airway surgery. (Yeah) But it’ll be long none the less. I don’t know a ton of details. I know usually kids are in from 3-7 days and some more. His surgeon was thinking a week. It really just depends on him. How he does, how he handles surgery and how fast they can figure out keeping is pain under control.

Covid. That’s generally the first thing people think when I say we are having surgery. Mitchell will have a covid test a couple days before as well as an antibody test for covid. If the test is positive surgery is canceled. If the antibody test is positive the. He can still have surgery as long as it’s a strong positive meaning he was exposed longer than 2 weeks. Restrictions will be tighter but as of now...they’ll let both Paul and I be there for surgery and after. He will be down at Mayo.

Grandma will hang with the other 2 until Mitchell is stable and then I’ll send Paul home to take care of those two.

There will be a couple days of preops just because it’s Mitchell. He will have an echo just because he’s due for one and really you just can’t be too careful. We will meet with the cardio,gist after that. Covid test, other blood test and then meeting with the surgeon as well as xrays of his back. His ENT will meet us the morning of surgery as she will be monitoring his airway. (Have I ever said how amazing Mayo is?) This alone makes me feel good about surgery just knowing she will be the one intibating him.

I will update after pre-Op stuff just so you are in the loop of what’s going on. Surgery date is the 19th the testing fun begins on the 17th. So maybe expect an update on the night of the 17th or the 18th depending on when we get tests results back. I do not know what the rules are on sending stuff to the hospital or how long we will be there. He will be in the PICU for the first night just as a precaution because of his history. So I know many have asked. I might just have to ask at preop or maybe go through the gift store and they’d know?

So here we go. Say some prayers for everyone. Mitchell is anxious, excited, scared. Everything a 15 year old should be going into surgery. He loves Mayo and that’s never changed. This time I tell him will be very different. We can’t do our regular routine because of Covid. He says “bummer”. Yep bummer is right. Mom and dad are out of practice with surgery. That life seems so far in our rear view mirror it’s hard to believe. We’ve been blessed for sure. He’s a tough kid and I have no doubt he will be tough through this one as well.
Until next time!

Sunday, December 16, 2012

EIGHT YEARS OLD!! I think every parent says this about their child, “I can’t believe he is going to be 8!” Where does that time go? Mitchell will be 8 and yet in a way I feel like we’ve just begun to live. Today is also Mitchell’s 2-year decanaversary. This means Mitchell has been trach free for 2…yes 2 whole years! I feel like we just started life. I feel like we have 2 lives…life before the trach and life after. Trach life seems just like yesterday. I don’t know that it will ever feel like a distant memory because it was so much of who we were. That said, that 1 piece of plastic got us to our 8th Birthday! It is part of what has made Mitchell a success and for that I can never hate it. So YEAH for 2 years and YEEEHAAAA for 8 years!!

For those who have followed Mitchell throughout the years and especially those who were there at the beginning; you know how special each birthday is for us. There are so many things different than when Mitchell was first born. I think that the IEP facilitator maybe says it best. “Katie, I remember our first IEP meeting. Mitchell was only a couple months old. You just said 1 goal was to take Mitchell to the store and to have him keep breathing.” It really is truly UNBELIEVABLE where we came from and where we are after 8 years! Mitchell has gone from trach tube dependant with scary breathing to a nose/mouth breathing kid! He has gone from a “we don’t know if he’ll crawl, walk, run.” to running away from me in the mall. We’ve gone from not knowing if he’ll be able to learn, to acing his spelling tests weekly. To say Mitchell has made it 8 years truly is an understatement. Mitchell has ROCKED 8 years!

So, let me go on about what he is doing lately…

He is doing SO well in school. I beam typing that! We switched his private speech therapists this year and he is ROCKING his device. He has said many things unprompted; “I is going High School” (on our way to a basketball game), “You play church” (no we don’t play church often, but for some reason he wanted to) and more that of course I can’t think of right now. Mitchell has gotten a maturity that has not been there. He is able to attend better at school. He is starting to do addition, starting to read, acing almost all of his spelling tests. These are all things that we had no clue he’d be able to do. He makes everyone smile at school and brightens their day. Just recently we have been running into many of the workers in the cafeteria. They all BEAM when they see Mitchell. Now to see someone light up when they see your kid-that is cool. They all love and adore him. Kids go out of their way to say hi to Mitchell when we are out and about. He comes home with cards made from kids in his class (girls but don’t tell him I said that). Kids like him. Mitchell is becoming a great kid. He works super hard and I couldn’t be more proud of him. 8 years is a big deal.

Ok enough bragging-I’ll update medically too. We were down at Mayo for an airway check in September. Everything looked great and so here we sit on our 2-year anniversary of NO TRACH. Pinch me!

One thing I’m really trying to focus on right now is Mitchell’s scoliosis. His scoliosis is staying the same right now. That said-eventually he will need surgery. Well, there is that 1�hance he wont…who knows Mitchell’s pretty good at beating the odds. SO, I’m looking at some alternative options (or maybe pro-active?) right now. Mitchell will start working with a chiropractor soon. The goal is to try and strengthen Mitchell’s muscles and better his posture so that hopefully we can try and keep this same status for a few more years. I’m not sure how this will all work, but I’ll keep you updated. Scoliosis is a frustrating thing-there is not much you can do about it and Mitchell’s curve is not typical for his young age. We’ll see what we can do though.

Other than that I don’t have a lot of medical stuff to report! Yeah! Mitchell is doing great medically. We’ll have a big long list of doctors to visit in the spring and I’ll have to report back. Seems as though I’m on an every 4-6 months reporting back. I apologize for that, but life is pretty much status quo and that’s great! SO, look back maybe in the spring. Many of you are on Facebook and you’ll get the notice when I update.

I hope that everyone has a great Christmas and enjoys their time with family. I know we sure will!
I will try and get a couple new photos on here but I guess the site I use to use isn't there anymore (with the slideshow) It may take a day or two to figure this out.

Take care,
Paul, Katie, Mitchell, Samuel and Gabriel

Thursday, December 22, 2011 9:14 PM CST

Wow-it has been way too long...I apologize. I can't even say we haven't had anything exciting going on as an excuse. I guess I update so frequently on facebook, that Mitchell's Caringbridge site doesn't get the attention it deserves.

I suppose I'll start where I left off. School. Mitchell has done great with 1st grade. His teachers are great and he works really well with his para. He is starting to read and is showing the world just how smart he is. Numbers and math continue to be a struggle, but reading, letters and words are his strong point.

That gets us to October....the boys had a great time with Halloween. Sam came up with the idea that they be the “Mario Brothers”. So, Mitchell was Luigi and Sam was Mario. We went to a couple different Halloween parties and then we also went trick-or-treating. It was beautiful weather for going from house to house.

November came with a bang for Mitchell. Mitchell started the month with a cold that moved very quickly into pneumonia. This is very unlike Mitchell as he really has not had pneumonia that much and he has never really had it in his left lung. The problem with having it in his left lung is that is the side where his bronchial is still partially collapsed. We knew that if he'd ever get it in this lung, it may cause some issues. He really handled the pneumonia well as far as breathing goes-he continued to have smooth breathing however he just couldn't keep his saturations up so he needed some oxygen. This cold/pneumonia went on and on. The length of the illness was due to the collapsed bronchial as it was harder to cough up those secretions and without the trach-we couldn't help him. Mitchell seemed to go back and forth. He'd have a good day and then spike a high temp for a few days, then he'd be ok for a couple days and he'd backslide again. After trying everything at home and being on a number of antibiotics, his pediatrician and myself decided we needed to get him into the hospital for a couple of nights to see if IV antibiotics could help. Mitchell stayed 2 nights and was discharged the day before Thanksgiving. He seemed to be doing better but still a ways from 100It was a very long month for us. Mitchell missed the entire month of school due to the pneumonia. During the time Mitchell was ill we were in contact with his doctors at Mayo Clinic. We knew we had to get him down there for his 4 month airway check and being I'm due the beginning of February, we had to do it sooner rather than later.

We took Mitchell down the beginning of December. He was not 100ut we felt we had to get the trip in and wanted them to take a look at his lungs to make sure he was getting better. We had a number of tests and met a few new specialists down there this time around. I'll go through each specialist, why we saw them and what we found out.

Pulmonologist-Obviously with the month we had he needed to see the pulmonologist. They did a CT of his lungs to see what was going on. Mitchell still had some pneumonia in that left lung though he thought it was on it's way to getting better. He was not at all surprised at the month we had considering the collapse in his left bronchial. He thought that Mitchell was well enough to go through with the scope and thought it might help him as they were going to do a “lung wash” which means they were going to put some saline in his bronchial and lung and suction it out. They would also culture this to see if he needed to be on any different medication. We will see the pulmonologist again when we come down again.

Urologist-We saw the urologist because Mitchell has a testicle that hasn't dropped. The urologist agreed that not only 1 but both needed to be “worked on”. He said there was no hurry and we could try and coordinate it with one of his upcoming scopes-in the spring or summer. Mitchell has to be 100or this surgery as the biggest risk will be infection and anesthesia.

Orthopedic surgeon-We saw an orthopedic surgeon because a number of Mitchell's teachers have been concerned about his hips. When he was younger he was diagnosed with hip displasia and we needed to make sure that his hips weren't getting worse. We got an xray of his hips and the doctor felt that he did not have hip displasia-his hips looked normal. They did however see that he has mild scoliosis. This is a new diagnosis. The scoliosis is not bad enough for treatment right now though it needs to be watched and we will have a re-check again during our next time down. They will continue to monitor the scoliosis and if it gets worse we might have to look at a brace for Mitchell.

ENT-Of course we saw our ENT to check Mitchell's airway. The scope went well and Mitchell's airway looks great! He will get checked again in April. He did end up spending the night in the hospital as his saturations were just not very high and we knew he'd drop lower once he fell asleep. He actually had a better night than I had anticipated though he did need some oxygen. The ENT was not at all surprised to hear of our month. She suspected that this might be what winters are like for us without the trach. That said-she felt that he wasn't in need of the trach as long as we agree that life is still better without it. This illness was long lived but it still compares nothing to 1 week of him sick with the trach. Those nights I'd be up all night suctioning and watching him close so his trach didn't plug. Not having the trach was frustrating because I couldn't help him clear his secretions, but he was able to hold his own and we got a lot more sleep at night.

We got home from our appointments and Mitchell continued to get better. I think I can say now he's pretty much back to normal, though I feel like I can't bring myself to say 100We have a treatment vest that we will continue to use at least through the winter to try and prevent this happening again. The vest shakes him up with the idea/thought that it will help keep his secretions thin enough so it's easier to cough them up. This will hopefully keep his chest a bit clearer. We'll see. We've had the vest for about a month. Unfortunately, we got the vest a week after the pneumonia started so at that point it was too late. Bummer. We'll see if this prevents any future pneumonia-I sure hope so!! This last week was Mitchell's first week where he went full days. He had school Monday-Wednesday and now he's on Christmas break. I'm hoping after break he'll be completely back to normal.

December 16....we hit Mitchell's 7th Birthday!! This birthday was particularly special as it was also his 1 year trach free anniversary!! What a year it has been! Birthdays are always so special with Mitchell as I still feel that each one we are so fortunate to have. To add the trach coming out on the same day-it is really mind boggling. It's hard to believe that he has been without his trach for an entire year! I don't know that I'll ever get over the fear of getting the trach back, so for now I just try and enjoy the days we have it out. Mitchell has enjoyed every bit of being a nose and mouth breather. Swimming, laying in a tub, dirt, bonfires, baseball fields...things that all children tend to take for granted (and parents). We have enjoyed being able to just get into the car and go somewhere without having to ask...do you have the suction bag? He can go to school on his own, ride a bus by himself....the list goes on and on. As for being 7...where does that time go? I look at Mitchell and he is getting to look so big. I remember when I came home from the hospital after having Samuel. I remember looking at Mitchell and thinking...ugh, he isn't my baby anymore. To be honest I'm afraid of what he'll look like when I come home after this baby. I know he isn't a baby, but there is something about holding a new born baby in your arms and then looking at the older sibling...it makes them look that much older...or maybe reality just sets in. Mitchell is doing great at 7 years old. He has done things that we had no clue he'd be able to do. We continue to set the bar high for him and he continues to reach that bar. He's a smart kid and we're so lucky we can call him ours.

We hope that everyone has a great Christmas!
Take care,
Paul, Katie, Mitchell and Samuel

Monday, December 19, 2011 8:50 PM CST

I promise I'll work on an update. Hopefully I can have something posted by the weekend!!!

Monday, September 5, 2011 9:48 PM CDT

There are 2 times in the year when I really look back and reflect on what we've been through. One always seems to be around Mitchell's birthday which also happens to be around Christmas and the first of the year; the second seems to be at the beginning of a school year.

The school year reflection seems to be new. I think that this started once Mitchell went to Kindergarten. He has basically been in school since he came home from the hospital so I'm not certain why this reflection period came so late. I suppose there is more preparing that goes into sending your child to Kindergarten, or 1st grade. Often times my reflection is sparked by something that I wouldn't expect. Last year...buying Mitchell's backpack. This year...Jeans.

Like many parents I recently went through Mitchell's clothes for the fall to see what will fit him this coming school year. Nothing, not 1 pair of jeans will fit him and I mean not even close where I could tell him to suck it it. So, we went out and tried to find jeans that would fit him and I soon found that a 6 year old might just be harder to buy jeans for than myself. (which believe me I never thought possible) At first I was stressed about this and frustrated. How could it be that I could not find jeans to fit my 6 year old? Then my last 6 years came rushing back. Remembering back to when Mitchell was a baby the stress and frustration soon became laughter. I can remember my entire life being surrounded around feeding Mitchell. When he was a baby I swear that is all I did. I maybe had a short break in between feedings and him refluxing it up. Then as he got older, I remember feeding Mitchell pancakes before going to see his pediatrician in hopes I could add at least a few ounces. I'd stress before appointments because I knew that we'd be told he needs to gain more. Night and day; day and night...eating. So I find it completely ironic that now I cannot get jeans to fit him because he is a big kid. Though we have not been to his pediatrician lately, I know that instead of hearing he needs to gain weight I know I will hear that we need to watch his weight. Boy have times changed. Now instead of shoving food in his mouth, we're constantly telling him he can't eat as he had just had 2 breakfasts.

This of course spurred further reflection as did a few fellow trach moms going through the possible decanulation process. I decided to look back into Mitchell's journal...just 2 years. It was simply 2 years ago our local pulmonologist told us that he would not scope Mitchell for another 2 years! Had we listened to his opinion...Mitchell would still have his trach and we would be just finishing up a scope only to hear that there was no change and to wait. It was 2 years ago that we decided that 2 years was just too long. It was that appointment that made me look into other options. It was only 2 years ago when we met the team at Mayo.

In 2 years our family has gone from...wait and see...we might be able to help...the trach is for life...maybe there is something we can do...lets give this a shot...NO TRACH. 2 years seems like a long time but many of you know how fast 2 years goes. We've been busy in 2 years and we've also had a lot of success in 2 years. At first when I started reflecting on these 2 years I got upset. Mad that we've sat here for this many years and all we heard was “wait and see” when clearly that was just not the correct answer. I have never really seen the point of staying mad long...what good does it do? It certainly doesn't help Mitchell. But, I also am a true believer of things happen for a reason and I truly believe that this medical indifference was possibly something that was just buying us time until we were truly ready to handle a “second opinion”. It was tough enough as it was and Mitchell was pretty stable. I can't imagine going through that when he was still having all of his crazy breathing episodes and on CPAP.

Mitchell has gone from having an eye on him constantly to us begging him to go play outside by himself. We have gone from fighting for nursing care with insurance to fighting for nursing care for school to putting Mitchell on the bus all by himself. It truly blows my mind when I think about it.

So, I'm sure as I send him on that bus tomorrow all of these thoughts will go through my head. I may have a tear in my eye, but I am so incredibly excited for him and our family at this huge step. I would be lying if I said I wasn't worried, or concerned or wont be thinking about him all day. I know I will be but I also know that this feeling will always be here the rest of our lives. After all, this is what having kids is about isn't it? I can only say that this feeling is 10 fold when you have a child with special needs...especially one who cannot speak and one who is already considered a “longterm survivor”...at 6 years old. It's the nature of the beast. But, that same feeling also reminds me of how fortunate we are to have that opportunity to worry. We are so proud of all that Mitchell has done. And once again we are reminded at how lucky we are to have Mitchell in our lives. So here's to another school year! Lets see what we can do this year! Good luck bud!

Love,
Paul, Katie, Mitchell and Samuel

Monday, August 1, 2011 7:01 PM CDT

We just recently got back from another trip to Mayo to check Mitchell's airway. I'm happy to report everything still looks great. We also had a different ENT look at his upper airway, his nasal passage to see what type of airflow he is getting. His nasal passage is pretty small and will need some work. This is not a surprise at all. The ENT felt though that right now wasn't the time to do this. She wanted to have a few more tests done so she could get the full picture. (keep in mind this is the first time they are looking at Mitchell from a “cleft lip/palate” standpoint) He will have a CT scan done of his face so they can better see what the nose looks like. It appears by just looking that he has a bone spur somewhere that shouldn't be and then of course the shifted septum. (which we knew) Both ENTs worked on Mitchell during his reconstruction so we know both of them well and like them both. They are both very happy with the results of the reconstruction and very happy with Mitchell's success with being trach free. We are again anticipating some bumpy roads ahead as we get back into the school year and fall. His ENT agreed that getting Mitchell a vest for compressions to help loosen up phlegm would really benefit him through the flu/cold season. We both agree that it could even mean the difference between riding out illnesses at home vs. in the hospital. I've been working on getting one of these for a year now with little success. Mainly because everyone wanted to “wait and see” how he weathered a cold without a trach. Mitchell does great, but we have to remember that his 1 bronchial is still compromised a great deal. Our next step would be to get our pulmonologist on board but being we have our ENT on board I'm not too concerned. (she typically gets what she wants)

Our next visit will be sometime in November. We are looking at getting everything done and then we wont be back until spring. So this next visit we'll see the pulmonolgist, do another scope and get a CT scan of his face. It will be a big trip but we're thankful that he wont have to go back until he has a few good months of school under his belt.

Speaking of school...Mitchell had a great time at summer school this summer. He worked with the same teacher he had during the school year and made some nice progress. He also worked with a great speech therapist who was new to Mitchell. (though we have met many times as I use to work with him) He really worked hard on using his device and worked on answering questions and writing stories. I think he did really well. Mitchell is now completely done with school until he goes to school in the fall...1st grade! It is so hard to believe that Mitchell will be in 1st grade this year! He will be gone ALL DAY! Most days I'm really excited for him and then of course there is part of me scared to death of letting him go all day. Overall it will be GREAT for him, Sam and myself.

Most know already, but if you have not heard our family's news...I'm pregnant! We will be welcoming #3 in early February. We're all very excited. We could use some prayers for a non-eventful pregnancy and a healthy baby at the end. So far things have been going well.

We have had a truly GREAT summer. This is the first summer we have not spent the summer doctoring or coaching so we have had all summer to just hang out as a family and basically do “normal” family summer things. We have spent a lot of time in Nevis where Paul's family has a cabin. The boys have enjoyed swimming with cousins and fishing with Mom and Dad. We've spent some a few weekends in Amery seeing Grandpa and Grandma and Great-grandpa. It really has been a great summer...probably the best we've had. I think we were due.

That's all I know for now. I will probably update once school starts in September or maybe right before school starts. We again thank everyone for checking up on us and keeping Mitchell in your thoughts and prayers. This little boy sure is getting to be not so little anymore. I keep saying he reminds me so much of my brother...if you know my brother, he's a pretty big guy. Right now Mitchell is weighing in at 57 pounds and completely solid and only getting bigger. YIKES. He is going to be one big kid.

I will try to get pictures up in the next week. Thanks for checking in!

Take care,
Paul, Katie, Mitchell and Samuel

Thursday, July 28, 2011 9:22 PM CDT

I'll be getting a new post up soon!! Hopefully after the weekend!

Thursday, June 16, 2011 7:59 AM CDT

I specifically write today because 6 months ago today our family was lucky enough to get the chance to get Mitchell's trach out. I can say 6 months later that it has been successful. Mitchell has been trach free for 6 months!! That to me seems like forever and yet it seems just like yesterday that I was suctioning, keeping a close eye on his saturations and doing regular trach changes. I cannot even begin to explain to you what these 6 months have been like for our family. I suppose 1 way I can try to explain it is Mitchell's way; so here is a story...

Sam always wanted (and still does) to be like his big brother. So, when Mitchell had his trach, we made a “play trach” for Sam. One that he could put on himself, he could suction and pretend he too had a trach. We were cleaning out the toy room this last weekend and found the trach. Sam of course put it on, he knew right where it went and what it was. I also put it on...look, Mom has a trach. Paul put it on. Then Paul turned to Mitchell. Mitchell! Look...lets put it on. Mitchell FREAKED OUT. He immediately started crying and shaking his head no. I think that in itself tells you what the last 6 months have meant for our family and mainly for Mitchell. Mitchell has always handled medical things with ease. He has always been fairly laid back and continues to love the hospital. Because of this we had NO idea he would react like this. The look in his eyes was terror. Mitchell has grown to love his new independence. He never knew he was missing it and for that I'm so thankful as it was just 6 short months ago that he told me he wanted his trach back. (the first few days it was out) Now, after living 6 months trach free; Mitchell knows what life is like without a trach and he does not want to go back. I can only pray that we never have to.

Mitchell has been doing well since I last posted. I don't like to brag too much as it seems as though I end up eating my words in the next post...so I will just say he has done great. Mitchell completed Kindergarten and loved every minute of it. Towards the end of the year we had a sack supper at his new elementary school. Paul and I were so proud when we walked in and heard a number of kids calling Mitchell's name...just to say “hi”. This probably doesn't seem like a big deal, but it is. All we want is for Mitchell to be accepted by his peers and this was a great way to know he really is. They were excited to see him and that felt great as a parent. Mitchell had a great year and he improved in numerous areas. I'm even more excited to see how he does next year when he's there a full day.
It will be a big change for him, but it will be good for him. (and mom)

We just recently went down to Rochester for a couple second opinions. I joke and say that we're bored now that we don't have trach/airway appointments every couple weeks so I have to drum up some new things. Actually, with Mitchell's “new” airway we need to be extra cautious if he goes under anesthesia. Because of this we will be switching some of his providers to down at Mayo. Our biggest one was the ENT but we will also be switching all of Mitchell's future cleft work down to Mayo. This is what our visit was for this week. I really want Mitchell's left nostril to be functional and right now it is not. It is still collapsed because of the cleft. The doctor we saw knows Mitchell and actually assisted in his LTP that helped him get his trach out. This is awesome because we don't have to meet a new doctor. She felt the same as I and we will be looking at options to possibly pop that nostril up a bit so he can get some air flow. She doesn't expect that it will be symmetrical but that isn't what I'm looking for...I'm looking for function right now. I feel he will handle illnesses better in the future if he can breathe out of 2 nostrils and not just 1.

That is about all I know right now. We are enjoying summer. Mitchell continues to love his freedom in water. Though it hasn't been really warm enough to swim, he has had a chance to play in water and loves the new found freedom we give him. I can't wait to get him swimming a little more!

Hope you are having a great summer so far. We seem to keep busy but are enjoying our time as a family with Paul not working. We continue to be thankful for all of the doctors and nurses who made it possible for us to reach our 6 month mark of no trach. I try so hard not to take trach free life for granted. Because of this, I keep a trach in my purse. Odd maybe, but it is a daily reminder of how lucky we are. I want to never forget that.

Take care,
Paul, Katie, Mitchell and Samuel

Sunday, May 1, 2011 2:49 PM CDT

Ok lets see if I can get my mind to get a journal entry out....

We've been pretty busy since we wrote last. Of course I had to eat my words about not seeing Mitchell's pediatrician. I should've known not to write that...statements like that can only come back to haunt you.

March gave us our first hospitalization since Mitchell's trach came out. I don't even recall how this all started but I think it started with a weird bug that both he and Aunt KT got. It really seemed to be an influenza type illness. I brought Mitchell in because of that. I figured if this is influenza, I want him on anti-viral meds right away. The test came back negative. If I can remember correctly, he seemed to be turning the corner and doing ok. However, somehow we ended up seeing the pediatrician 3 times that week. YEP...3 times. (that's when I ate my words) I believe it was a Monday, Thursday and Friday. Monday-influenza came back negative....Thursday was a re-check and he was doing pretty well and Friday...he was admitted directly from his appointment. Oh how it is all coming back now. When I brought him in Friday his temp was 100.4 and by the time we left it was 103 and he was unable to keep his saturations above 90. It seemed like this was more of a RSV type illness and being it was the first without his trach, Dr.Welle really wanted to watch him in the hospital. (that and there was a major blizzard coming that night-a kind of night you don't want to try and have to get to the ER) We stayed 2 nights and Mitchell slowly got better. All tests came back negative but I can say I think it was still RSV as he really acted like he did the last time he had RSV. After a few days he was better and back to school.

April didn't get much better for Mitchell. He had a healthy week and then we had our trip back down to Mayo. That trip went actually very well. His airway still looks great! Graft Great! AND....drum roll please....Dr. Thompson officially said Mitchell could discontinue nursing care at school! We discussed this in depth and both felt comfortable with the decision. She also made the decision that she would not see him again until JULY! WooHooo!! A very successful trip to say the least! So, I guess not all bad news in April...that was very good news. Isn't it sad how sometimes the tough times cloud those good times?! We extended our Rochester trip by just a couple days because of the flood. Our house was fine but we expected it to be surrounded by water once again this year and I didn't want to mess with that-so we took and extended our trip. We actually spent a few days in Amery doing some visiting...it was nice to get back home for a bit.

We got back into town and got Mitchell back to school. Our next adventure was a bit of an oops on Mitchell's part. He ended up aspirating on a peanut butter sandwich during snack before bed. We know this because he was eating and then he did his “aspiration cough” while turning red. He was fine, went back to normal and had a normal night. About 12 hours later he spiked a temp and I knew it was from the PB sandwich incident. Monday Mitchell was doing fine but he was starting to get “junkie” sounding and he still had the fever so I took him in. My “plan” was to get him on antibiotics right away being I knew this wasn't viral and thought this would be a good step. His pediatrician didn't feel comfortable doing this yet as he sounded actually pretty good. He was hoping that he could come out of this and not need meds. Monday night he had a little more difficulty getting through the night without alarming (meaning his oxygen saturations were going down). Once again I brought him in on Tuesday with the “I told you so” look on my face. His pediatrician accepted the look and said he was hoping that this was just a fluke...but “I guess after 6 years should know better.” We were on our way home with our antibiotics. He did do a chest x-ray and that seemed to look ok. Each day got better for Mitchell...until the end of the week. You see, the problem with going to the pediatrician is that it seems like EVERYTIME we go there, we end up coming home with something new. SO-now Mitchell once again spiked a temp and was starting to need some oxygen when sleeping as his saturations were dropping again. I knew that this was different than earlier in the week meaning this wasn't from the aspiration incident. Back on into the peds. Office. (do you see why I said earlier that I ate my words when I said we hadn't seen his ped since the trach was gone) Sure enough Mitchell had a double ear infection and clearly had a cold. Runny nose, ear infection, watery eyes, chest congestion...all that good stuff. Poor kid. We switched antibiotics and now he is slowly getting back to normal.

May...ahhh, May 1st. He still has signs of the cold but is going to school and his saturations are good and in high spirits. I'm hoping and praying May is a better month for us. I feel like we've seen his pediatrician more times in the last 2 months than we had in the last 6. Overall, Mitchell has handled his illnesses fairly well. I am working on trying to get him a treatment vest and to be honest these last 2 months may have just helped us do that. The treatment vest is a device you put on him and when you turn it on it shakes him. This loosens up any mucus/phlegm that would be in the chest. He really has never needed one, but it just seems like without the trach, it would make life a little easier for him.

We continue to monitor the eating and aspirating closely. We may end up with another swallow study in July if we have another big episode like that. I am not overly concerned as Mitchell has done SO well in the last 5 months with his eating, this seemed to be an isolated incident. That said, it is still something we take very seriously and watch closely. His eating skills aren't the greatest and we know that he is high risk for aspirating, that said, I still feel that having the trach out is the best option for him as well has him eating orally. I still consider him doing extremely well. We hope that March and April were just “off” months as far as illness goes. I'm actually a bit surprised as we had such an awesome winter as far as staying healthy but the spring has been tough on us.

School! Mitchell seems to be doing well in school. It has been tough the last 2 months because he really has missed a lot. But, he seems to bounce back into things and is working hard. He has done very well without having the nurse and he seems to like having the independence. We have asked him if he misses having the nurse with him and he always says no. I thought that maybe I would be more nervous about it, but I think his ENT and I both came to the pulling point at the same time and that made me feel confident that we were doing the right thing. There will never be a time that I wont not worry about Mitchell. I think that this just comes with the “official” diagnosis of trisomy 13 as it is such the unknown. But, I also know that I cannot live my life hovering over him nor can I have a medical professional be around him 24-7. So, I was comfortable with pulling the nursing care. Now, talk about freedom?! We have always been “under the wing” of nursing care. 6 years! Even though towards the end we were just having them go to school with them...we STILL had someone coming to our house to take care of our child. We have been fortunate with our nurses in the last few years, they have been great. But, it is an unexplainable feeling when you know someone will be at your house every day of the week. Calling the agency and telling them we were done...ahhh, it was fabulous. So, that is 1 HUGE change for Mitchell at school. Like I said, he seems to like the independence. He still has a 1 on 1 para though and he really needs her to just keep tabs on him and help him stay on task.

Mitchell has made some pretty great strides though in school and we are very proud of him. He is starting to read! This proves very difficult as you can imagine. How can you read when you can't talk? This is the question everyone has been trying to figure out. Well, his teacher made up some special books that use words that Mitchell has on his talker. Mitchell navigates his talker and reads those books very well. When we were in Amery he was reading his book to Grandma. The sentence read, “I like the Wii”. Mitchell “read” his words...”I.....like.....the.....” then he looked up and had an odd grin on his face. Instead of “reading” “Wii”, he read, “we”. He laughed so hard. Mom and I looked at each other both with a puzzled look as well as delight. What a smart kid. He thought that was so funny, that he figured out he could say, “Wii” by using the other “we” button.

He continues to have some difficulty with numbers. They just seem to be a bit harder than letters and words. But, he continues to make good progress. I'm actually very excited to see how he does next year when he is going all day. I can only imagine the growths he'll make!

I think that is really about all I know right now. I will be working on a new slide show and some new photos. I'm also thinking about moving Mitchell's caringbridge site to a new caringbridge site. This would allow you to click that you want an email when I update the journal entry. Give me feed back on this...the reason I haven't is because I just don't want to lose this old site and journal. It has been with us through the journey and I guess I've kind of grown attached to the “old site”. I know that is wouldn't be deleted right away, if ever. But, there is something about keeping all of the entries together. SO, I'm still thinking about it. Being I'm not updating as much though I know it would be nice for the readers to get notifications when I do update so you don't have to come back and check all the time. Let me know what you think.

Take care,
Paul, Katie, Mitchell and Samuel

Thursday, April 28, 2011 8:04 AM CDT

I promise I'll update soon. I have tried many times, I just can't get into the writing mood. Sorry, it'll be on soon though. And, I'll try and get some more new photos...and a new slide show-I notice all the photos are from last year!

Sunday, February 27, 2011 9:01 PM CST

I'm so sorry it has been so long since an update!! Mitchell is doing great and we have grown attached to this new life he has as a nose breather. I told Paul, the first time I went down to Rochester with Mitchell as a “nose breather” I cried as I walked into the hotel room...why? Because I had 1 bag. 1 bag! This is just 1 way our life has changed. I no longer need to strategize on how I'm going to get all of Mitchell's bags and trach stuff up to the hotel room while trying to keep him from running somewhere he shouldn't...nor do I even have to pack it! I love that! Packing is really a piece of cake because I really only need to pack clothes now! Can you believe it?! JUST CLOTHES! Of course I guess I do put the oxygen in the car and the neb-but really that's it...no brain work at all. I LOVE IT.

Mitchell's stoma closed in about 3 weeks. This means that we got the go ahead to dunk him in the water and to go swimming. Mitchell is LOVING his new found freedom in the bathtub. So much so that the boys now take a bath in my huge tub so they have more room to splash and “swim” around. They both love it. I'll put a picture up of Mitchell's first time laying on his back in the tub. As much as I hated the trach-one thing it did GIVE us is appreciation. I can tell you unfortunately I do not remember when Sam first laid on his back in the tub...this is how you get lost with what “should be”. It is so easy to take something as simple as laying on your back in the tub for granted. Well, Mitchell got to do it and he LOVED it. The picture says a million words.

Mitchell has always been a very happy kid. I really never thought he could be happier and yet somehow he seems even happier than he was with the trach. Mitchell truly loves life and now without his trach, he loves it even more. I'm so so thankful for what the Mayo Clinic/St.Mary's hospital and Dr. Thompson has given us. Thank God for second opinions.

Just recently Mitchell went swimming for the first time. Again, he loved it. Mitchell was a crazy man in the big pool, kicking, splashing. It was so fun to see. I am so incredibly excited for the summer. I've always enjoyed summer but I feel like this has opened up so much more. I always felt like we didn't belong. Even though Paul and I aren't big water people-I hated knowing Mitchell COULDN'T be a water person. It's just one of those things when someone tells you you can't do something-you miss it even more, even if it's something you didn't like to do. I felt sad every time I heard of a pool party or anything having to do with the lake and kids. We always try to act like it's no big deal in hopes that Mitchell wouldn't realize what he was missing. He handled it so well when really deep down I was in tears knowing that this 1 stupid piece of plastic that was saving his life...was also taking so much more of it away. But, of course having him here with a trach was far more important than the bits and pieces of life he was missing due to the trach.

I think the best part about non-trach life is just being able to go wherever you want without a 10 pound bag. Not carrying that suction machine around-I feel like I've lifted a ton of weight off my shoulders. I also feel like we don't have to take a stroller with us everywhere we go. IT'S GREAT.

OK-now onto the medical garb...
Mitchell is doing great. We did discover that the scar band that had grown before the trach was removed is still growing. We have made numerous trips down to Mayo for scopes and dilation. We are now down to every 4 weeks. We were going every 2-3 and that was a lot. The scar band seems to be growing slower and slower. We're hoping that in the next 2 months it will be completely done growing.
The graft is still sitting in his airway where you can see it. Typically the tissue will slowly grow over the graft and it will just become part of the airway. Mitchell's tissue has not grown completely over the graft yet but that's ok. The ENT said that he is not doing anything she didn't expect nor is he being difficult. She also said that she no longer loses sleep over his airway. She feels the graft is very stable and we are out of the extreme worrying part of the process. Right now we are just tweaking his airway to get it to be as open and stable as we can. This is great news!

Many have asked the some questions after the trach was taken out and I'll try to answer them...feel free to leave questions though in the guestbook though if you have any that I've missed. 3 come to mind...

Is he sick of the hospital....NO! Mitchell still LOVES going to Mayo. He absolutely LOVES that place. He loves going back to the OR and loves “talking” to all the doctors and nurses. He loves absolutely everything about that place. I don't understand it, but I'm not complaining either. Mitchell has made this process so much easier than he could've.

Is he talking? I get this question a lot. I will be pretty blunt here. Mitchell is not talking yet. Because he is 6 years old, the chances of Mitchell being non-verbal JUST because he had a trach is pretty slim. He has always been able to make sound with his trach-so by 6 years he should've been at least attempting to make more words than he has. He really had not. He will say an occasional word-and it will be clear. However, because it is so sporadic this also indicates that there could be something more going on-more of a wiring issue than a trached issue. Only time will tell. He has only been without a trach for a couple months, but like I said-chances are there is more of an issue with the connection of his brain to his mouth than him not talking because of his trach. (oral motor or oral motor planning) He is however starting to make more sounds. He has the M sound down and I hear him say, MMMmmmmmm in the morning when he wakes up. So he is connecting that Mom starts with M and he says Mmmmm to call for “mom”. The boys asked to be excused after supper. Mitchell is able to say, “MMM” for may and he does say “I”. So he is saying more sounds and he's trying more...and we're trying to get him to say more. This has always been a sensitive topic for me because I've never wanted him to feel bad that he couldn't talk. I don't want him to get frustrated that he can't talk. And, I don't want him to think that we are disappointed in him that he cannot say something. So, there is a balance of trying to get him to attempt it without getting so obsessed that you get him to clam up and get frustrated. He is working with speech and we'll be getting him more as soon as we get feeding under control.

Is he eating or using his g-tube? Mitchell is eating everything by mouth and doing great. We thicken his liquids once in awhile but for the most part he can eat and drink anything. He does better if he drinks out of a straw instead of an open cup, but he is working on that and doing better. This last scope the ENT looked for evidence of aspiration and she did not find anything. SO-he is enjoying food again. He still has his g-tube (stomach tube) but we really don't use it. I will use it for meds once in awhile, but he is very much able to take meds by mouth as well. Sometimes I let him decide how he wants to take his medicine. Sometimes he chooses to take it orally and sometimes he wants it to go in his tube. The hardest thing about not using the tube was Mitchell really missed having night feedings. Imagine getting a full tummy all night and then getting that taken away. He wasn't thrilled about this and would ask every night to be “hooked up”. Stinker. I'm thinking we'll pull the g-tube this spring but I haven't decided yet. It is nice to have in case he gets sick-I can push fluids without a fight...but it is something to maintain and wouldn't it be nice to be completely tube free?! I know that his pediatrician will not like the idea of taking it out. So, we'll have to weigh the pros and cons.

Speaking of his pediatrician...we have not seen him since Mitchell has been trach free! I feel very bad about this because he has worked so hard with us on just keeping Mitchell healthy. But, I dread taking Mitchell into the clinic because I just don't want him to get sick. SO, Dr.Welle will have to wait until we either get sick or it is spring and out of cold and flu season. I'm excited for him to see how well Mitchell has done!
Thanks again for all of the thoughts and prayers through this process. I'll try to update again after his next scope-which is the end of March. Sorry again for not updating. I'll try to get photos up soon!!

Take care!
Paul, Katie, Mitchell and Samuel

Saturday, February 26, 2011 8:47 PM CST

I promise I will work on a new update soon!! I'm so sorry it has taken so long. I'll have to get pictures up too!

Friday, December 17, 2010 8:54 PM CST

Sorry it has taken so long to get an update-my computer crashed so I had to wait until I could get to a different one. Boy do I have some updates for you…
First of all; our brave boy turned 6 yesterday. 6 years old! As always every birthday for Mitchell is so very special and we never for once take them for granted! 6 years old!! It really is hard to believe that we’ve made it this far!!

Many already know our big news and if you don’t-hold onto your seats. I brought Mitchell down to Mayo for a sleep study on Tuesday night. He passed with flying colors. The next day was his scope. The surgeons were way more confident than I was that this was going to go off without a hitch. However, Mitchell had been breathing a bit differently lately, so I wasn’t so sure. The scope went well…not perfect…but well. Mitchell keeps growing scar tissue by the graft-above the trach. This isn’t uncommon, but is a bit odd that it keeps coming back. It is a very very thin layer of skin type material that grows kind of in a circle around the trachea-this doesn’t make the trachea smaller-but makes only part of it able to pass air. It really is hard to explain unless you see the photo. The good news is that this tissue is so thin that it is easily taken care of by dilating. This means she puts a balloon in his airway, blows it up and the tissue is broken and he can go on without issues and his airway is opened up once again. After this was done-his airway looked great. Talking with the ENT we decided that IT WAS TIME! Something that I thought we’d never come to…it was time to give Mitchell a chance to breathe without a trach! Because she had dilated the airway she wanted to give him the night to rest and then we would plan to pull it the next day…ON HIS BIRTHDAY. She was very excited about this…because, “how cool would that be to have his decanaversary and birthday on the same day?!” (meaning: the anniversary of no trach) She also felt that getting the trach out as fast as we could, would probably help stop that tissue from growing back…we hope.

Mitchell’s birthday started like any other day….him waking up around 6ish and me putting on cartoons so maybe I could nod back to sleep. (we are in the PICU) At 7 the resident came in and said, “Well, are you ready to do this.” I’m not sure what I was expecting…but I guess I wasn’t thinking we’d do it at 7. But, that was the time, so we proceeded. He was extremely confident that Mitchell would do fine….I myself was looking around thinking..um..shouldn’t we have 20 people in here JUST IN CASE? Nope, he’s fine. (we did have a respiratory therapist there) I was able to do the honors of taking the trach out..hopefully for the last time. Mitchell coughed a few coughs, looked up at us…then turned his head to continue to watch cartoons. There were no fireworks…no marching bands, no claps or cheering….we just went on with our day as though this was “normal”. I asked a few questions, he said “have a nice day, Happy Birthday Mitchell”…and went on with his day. The entire experience was so nonchalant and yet the task at hand was anything but. I felt like it was a dream…and maybe I still feel like that. Mitchell was so proud that it was his birthday and mom was so proud that he got to spend his birthday breathing through his nose and mouth. The child-life specialist brought a balloon in for him and a gift and some doctors and nurses sang happy birthday to him. (he loved that) We ate cupcakes and just hung out around the unit. Pretty low key birthday…but he was given the best gift of all…even though he may not realize it yet…he will as soon as I dunk him in the water! I CAN’T WAIT!

I’m not really sure what the final plan is but it looks like Mitchell will be discharged tomorrow. (Saturday) They want us to stick around town for a little bit “just in case”. We well then need to come back in a month or so just to make sure that scar tissue is not forming again. As much of a pain it is to go back and forth, we’re so lucky we found our surgeon. She has changed our lives and Mitchell’s life…and we will always be grateful for that. Everyone has been so great here, they really love Mitchell and we’ve had a few nurses in tears just being so excited for him. About 6 months ago I remember feeling like such an outsider here and now we remember who everyone is and they remember us…it is a great feeling.

So that’s our news. Very exciting Birthday and Christmas! With that I really would like to add-please keep Mitchell in your thoughts and prays. This isn’t over yet…he’s doing great…but we still have some things to figure out and he could still use prayer support. Also, please keep the other kids in the hospital in your thoughts and prayers. It is always hard being here and having GREAT news. It’s great for us and we deserve this…but then you get into the elevator with a crying mom or you walk into the PICU and you hear a code blue with a family crying outside their child’s room. It is a very odd place to be…so many different emotions and so hard to be so excited when you know others are in pain right next to you. We have been on that end too and know that pain…so please keep these families in your prayers!! It is always hard to be in the hospital, but even harder around the holidays. (seems just like yesterday we were spending Mitchell’s 1st Christmas in the NICU)

Thanks for all of the support! This has been a long journey-it isn’t over yet but boy did we get a good reward this week. It was well worth the driving, the hotel stays, the sleepless nights. God is good.

Merry Christmas!
Paul, Katie, Mitchell and Samuel

pictures-I'm trying but it's a bit tougher with this different computer. I'm putting a link on...hopefully this will work...
http://www.facebook.com/album.php?aid=339375&id=672902845&l=7cce36ec33

Saturday, December 11, 2010 7:56 AM CST

I will update soon-probably Wednesday the 15th or Thursday the 16th. And I promise I'll try to get new pictures on and a new slideshow!!

Tuesday, November 2, 2010 9:05 PM CDT

We hope everyone had a great October and fun Halloween! It is hard to believe that it is already November!! Where does the time go?

We have been back down to Rochester and once again have all good news!! I’m not really use to all of these good reports…but am really starting to enjoy our time down there.

We started our visit with another scope. Mitchell’s airway looks great! They had to take some granulation tissue out and had to dilate his airway a bit. We were told that this is very common after the reconstructive surgery he had. The dilation was needed because of a type of scar tissue that was forming. They put a balloon in his airway-blow it up and then take it out. It worked great. It was fun to see the airway pictures and to see how open his airway is. He still has the left bronchial collapse, but we knew he’d still have that. The trachea still collapses but it is a lot better. The ENT said that a typical kid Mitchell’s age would need a 5.5 endotracheal tube (the tube they use when in surgery to help you breathe). Mitchell’s airway will now fit a 5.0 ET tube. SO, he is “almost” normal as far as his airway size! She is very happy with this! The graft continues to look great. She said that she saw no cartilage; which means that the graft is getting scarring on top of it-which means it is healing fast. Obviously this is great news! We are out of the extremely dangerous point of the healing process although she did stress that it can still take up to 6 months to heal completely so it is still vulnerable.

Cardio-we had an echo done. Last year we found that Mitchell has a single papillary muscle in the mitro valve. Typically you have 2 of these muscles…Mitchell has 1. His echo came back the same in that the valve is still working like it should. The cardiologist said that unless his pediatrician starts to hear a murmur we are able to wait 2 years before repeating the echo! Yeah!!

Swallow Study-Mitchell’s swallow study went well. He was a little reluctant to swallow at times, but when he did he did great. He had more pooling than he had the last swallow study, but he seems to coordinate his swallow. We are now trying to get Mitchell back on full oral feeds (very slowly). We are still very cautious with aspiration. Right now he is on puree foods and thickened liquids. He is doing very well with these foods. We are hoping to move him to softer foods in a week or so. Mitchell loves being able to eat-even though the main staples in his diet right now are yogurt, pudding, mashed potatoes and squash. He doesn’t seem to care as long as he can eat. We are noticing that he is getting a pretty big obsession with eating and food. We’re hoping that as he eats more he is more confident that we will continue to let him eat. Right now we need to proceed with caution, as we’d hate to have to back track because of aspirating.

We also had an appointment with the nurse practitioner to get Mitchell fitted for a speaking valve and possibly try a cap on his trach. During this “test” they put a speaking valve on his trach and they measure the pressure. He had high pressures so they drilled a little hole in the speaking valve, this should help him tolerate it better. BUT-they also decided just to see if he would tolerate a cap. A cap is different from a PMV (speaking valve) because this caps the trach off totally so Mitchell would only be using his upper airway. The PMV opens up the trach when he breathes in but makes him breathe out his nose/mouth so he can make sound. They did not expect him to tolerate the cap for very long because he needed a hole in his PMV. Well, he proved them wrong. Typically they would put the cap on for 5 minutes and many kids need to have it removed because their oxygen saturations aren’t staying up or they are showing signs of having difficulty breathing. Well, Mitchell surpassed the 5 minutes. At this point the NP decided to call in Dr.Thompson. (The ENT) to see how she wanted to proceed. They originally thought they’d send us home and we’d try capping trials. We had to get to our cardiology appointment so they gave us a saturation monitor and told me to keep the cap on Mitchell and check him every 15 minutes to ½ hour or more if he seemed to be struggling. (This was after they had Mitchell running up and down the hall-saturations during this 99-100�APPED) We continued on with our day and Mitchell did beautifully capped. We checked back in at the end of the day and the ENT was so shocked and yet excited to see that Mitchell still had his trach capped. (5 hours later!) She asked if we would be willing to stay a couple of nights so that they could observe Mitchell closer and try to get him capped 24 hours a day instead of going at a slower rate at home! I was about as shocked as they were that he had done so well but also very excited and of course thought staying would be a great idea! Capping is something some ENTs do before they decide to take the trach out! The thought is-if the child can breathe and keep his/her saturations up when the trach is in but capped, he/she should do fine without the trach. Keep in mind his trach is still in, so not only is he trying to breathe through his nose/mouth but also he is trying to do this with a trach just sitting in his airway…not helping him at all but taking up space. I myself find it pretty crazy that he is able to do this and able to handle it so well. The ENT said that she has had kids do ½ this well and have done great without their trach…so she is very excited. Mitchell and I stayed 2 nights. The first night he went to sleep with his PMV and did fine the second night he went to sleep with his cap on and did GREAT. (Better than with the PMV) SO-Mitchell did awesome. He is now capped 24 hours a day. We take it off 3 times a day to suction just to make sure the trach is clear. He seems to be clearing his own secretions well though needs to be reminded to cough at times. (This is all very normal)

We will go back down to Rochester in a month to check his airway again and to have a sleep study. At this point we have no specific time as to when/if they will try and pull the trach. We have some ideas but we need to wait for these next tests and then we will know more. I’m guessing that taking the trach out would not be a scheduled thing. It will be a time when we are down there and they’ll just decide to do it...so it’ll be just as much a surprise for us as it will be for you reading. We have discussed the dangers that go with taking the trach out during the winter so this along with where he is at with eating will play a big role in what happens in the next few months.

We again thank everyone for your support. The last 6 months have been anything but easy and it is great to have such supportive friends and family. We are so; so fortunate that Mitchell STILL is so excited each and every time we go down to Rochester. He loves the doctors and nurses and just loves Mayo. I was a bit concerned after all Mitchell has been through there but he continues to be a trooper and continues to love going. They gave him a poster of the hospital this last visit and he is excited to put it up in his room.

Now for some fun stuff! Mitchell and Sam had a great time trick-or-treating. Mitchell dressed up as Curious George this year (the monkey) and Sam decided to be Thomas the Train. We went to more houses than we had planned because the boys were having so much fun and they were being so good. It was a lot of fun.

Mitchell is enjoying Kindergarten (when he is there). He has already missed so much but hopefully in the long run all these appointments and missing school will end up making him miss less in the future. He is loving his classroom though and his teachers. We just got his school pictures. What another great symbol of how far he has come.

I'll try to get some new pictures up one of these days!!

Thanks again for the love and support!
Paul, Katie, Mitchell and Samuel

Monday, November 1, 2010 8:15 AM CDT

update soon!!!!

Sunday, October 3, 2010 1:59 PM CDT

We’re back with lots of good news from Rochester!

We went down to Mayo Wednesday night. Mitchell had an appointment with the dermatologist on Thursday and then his scope was scheduled for Friday morning.

The dermatologist was looking at Mitchell’s bald spot on the top of his head. She said that this is not very common at all…like 1 in a million. (Go figure) It isn’t that Mitchell lost hair from being on the operating table for so long; it is the amount of hair he lost. He has a pretty big bald spot on the top of his head that started with a scab. She didn’t want to make excuses as to why this happened, but said that possibly Mitchell’s scalp “could” be more sensitive because of his trisomy 13. Many times kids with trisomy 13 are born with head lesions. Mitchell was not, but she said that doesn’t mean his scalp isn’t more sensitive than that typical kid. She said that there are kids on the operating table longer than that who have no issues like this. The good news is she felt that it should grow back. She was encouraged that there already seems to be some very fine baby hairs growing. We can put some Rogaine Foam on it to see if that helps. If it doesn’t get better, we’ll go back in 3 months and look at other options.

The scope! Mitchell had a scope. The plan was to reassess his airway and decide if he needed the t-tube put back in or if he could go back to a regular trach. Well…they removed the t-tube!!! The graft looked great and she was VERY VERY pleased with how the airway looked! He still has collapsing in the left bronchial and we know that will always be there. His trachea still collapsed a bit, but was A LOT better than it was before! The next step will be to re-check his airway in a month to see if it is staying open! This was GREAT news and we really needed to hear this!

Mitchell wasn’t swallowing with the t-tube in. He still isn’t swallowing but we are expecting this to take awhile. His vocal cords were forced back and they could not move. These are the last protectors you have for your airway. They are basically muscles...so you can imagine what it does to them when you don’t use them at all for 2 months. It’ll take awhile for him to get back to “normal”. We hope and pray that he will get back to normal, but him making sounds already is a positive sign. In a day or two I will start encouraging him to swallow. I will also start coloring his mouth with food coloring so I can see if he is aspirating. We can do this by encouraging him to swallow and then suction him to see if we get any colored secretions out. We will move at a slow pace or as slow as Mitchell wants us to. He will not be able to eat until we know that he can eat safely. We will probably have some different swallow studies done to make sure that he can swallow safely. We are still discussing the best way to do this. The ENT and I have different opinions on this and we will work together to try and get the best results for Mitchell.

Mitchell just had a 1-night hospital stay this time, which went well. It was nice to see all of our new friends in the PICU. Many of the nurses Mitchell had were there and it was nice to say “hi” and have him doing so well.

Thank you so much for your thoughts and prayers. They certainly got us through these 2 months! We will continue to pray that Mitchell’s airway stays open and the graft just gets stronger and the airway gets wider! We are so proud of Mitchell and how he has handled all of this. He was excited to get back to the hospital and was happy as ever to go back to the OR. They took a really fun picture of him with the scope-just shows that they really do try and have fun with him before they put him under. They all seem to remember him and enjoy working “on” him.

I took a picture of his trachs. You will see the trach he had before his LTR surgery and then one of after. (The one he has in now) This is absolutely amazing; the size difference is just crazy!

Take care,
Paul, Katie, Mitchell and Sam

Tuesday, September 28, 2010 9:43 PM CDT

It's hard to believe that September has come and gone. Mitchell has now had the t-tube in for 8 weeks. We will soon know what is airway looks like and to be honest...I'm scared to death. I think the last time I prayed this much was when Mitchell was born. I will update next week with hopefully good news! Thanks for the thoughts and prayers!!

School is going great for Mitchell. He missed 1 week because he had a cold, but he is back in there and doing really well. I'm not really sure what it is but I think that Mitchell seems a lot calmer this year. He seems to be sitting better at group time and the kicker is, group time is longer. He does get antsy and actually uses being suctioning as an excuse. The nurse knows this though and uses her best judgment as to when he needs it and when he is just trying to get out of work. (stinker)

I have to say we are so very fortunate as he has a terrific team this year. I honestly don't know that I could've hand picked a better one. I feel really good about Kindergarten. He is going to do great!

We've had a lot of changes lately and it has been tough all around. We "temporarily" (we hope) lost our nurse and so Mitchell is going with a new nurse to school. The new nurse is doing well and Mitchell seems to really like her, it was just hard to not have Anita with Mitchell as she knows him so well. We also lost our long-time private speech therapist. I really liked her and so did Mitchell. She really knew her stuff and I thank her for getting Mitchell up and running on his speaking device. She really will be missed. This along with mostly new teachers...lots of new faces for Mitchell. He of course handles it like a champ.

So our next Mayo trip is right around the corner. Mitchell will go into the OR for this visit. They will do a scope and check out his airway and the graft. If the graft seems to be healing well, she will put a regular trach in. If the graft needs more time and help, she will put the t-tube in. Again, I pray pray pray that this does not happen. Though we are all getting use to this new tube I am very worried about his swallow and about long term problems due to the t-tube. Mitchell will stay in the hospital overnight for observation no matter what they decide to do. Please say some prayers that this scope goes well. I just want this to go his way...of course not only for him but for all of us. He really has been such a great kid and has taken these changes so well. I just feel that this really could be his "reward". Ahhh..if it only worked like that.

Again, I'll update soon. Those with Facebook know that I update on there much sooner as I can control a little more who looks at it. But, I will do my best to get a new update soon! Wish us luck!!

Thanks!
Paul, Katie, Mitchell and Samuel

Wednesday, September 15, 2010 3:24 PM CDT

Well, the first day of Kindergarten has come and gone and Mitchell did great! He was very excited to get back to school. He found out he gets to ride his old bus driver’s bus, which he was very excited about. He also found out that his good friend Anna was going to be riding his bus. Anna isn’t in his class this year so it is nice that he’ll at least see her on the bus. Anita (Mitchell’s nurse) said that they were both full of smiles when they saw each other.

Unfortunately Mitchell has only been to 2 days of Kindergarten. This last weekend he started showing signs of a cold and it seemed to hit fast and hard. So, Mitchell has missed school this week. I’m hoping that we’ll be able to get him back in the classroom by the end of the week but we’ll see. This cold seems to be a nasty one. I had him in on Tuesday for a chest x-ray and a culture. The x-ray didn’t look bad so that was good. We wont know about his culture for a few days. He really is requiring a good amount of oxygen with this cold. Typically he only needs a little oxygen if any. The last few days he has needed it every night and during naps. He has also been very close to needing it during the day. He has so much mucus and then he still isn’t swallowing because of that tube, so that complicates things even more. I’m sure he’ll come around, it’s just very frustrating for me to see him feel bad and to miss so much school.

Since the last entry we had a trip down to Rochester. Mitchell had an appointment with both his ENT and the surgeon who put in the g-tube. Both appointments went well and really there isn’t anything new to report. The ENT was thrilled to see how well he was doing. She wasn’t surprised that he still wasn’t swallowing and just suggested to continue to work on it. She said that the next appointment they would go in and do the scope. They will look at his airway and re-evaluate. This means they will decide if they want to put the t-tube back in or if they want to take it out and put a normal trach in. They will put a normal trach back in if the graft looks like it is healing the way they want it to. If they feel it still needs some healing time, they will put the t-tube back in. (this is the tube he has in now)

We could really use some strong prayers right now. 1. For Mitchell to feel better. And 2. For the graft to look good so we can get the t-tube out. Though there are positives to having this t-tube, it has its drawbacks and I’m afraid the drawbacks way outweighs the positives. Mitchell has been a lot more work with this t-tube in and it really is getting exhausting. We have to watch him constantly and nights are getting to be a lot. I’m really not sure how much longer we physically and mentally can handle him with the t-tube. Of course we can always say we need to get it out but I guess that would suggest that we are ok with the graft as is. (We could also think about getting some nursing care hours) It is hard to focus on what we are doing this for when we’re so tired and it would be easy just to call it quits and tell her to take it out. But, it is important to remember that we trust HER as a surgeon to get us to our goal of a trach free Mitchell. A few months of hard work and exhaustion may pay off in the end and I guess we just need to keep that in mind. That said…I ask that you pray hard, think hard, cross everything you have or do whatever you do when you want something…do all that times ten in hopes that we can get this darn t-tube out during that scope! I can say that will be one scope I will be extremely nervous to hear the results.

This is kind of a tough week to write an entry as I’m a bit down in the dumps with Mitchell feeling sick. I know that I can’t help it, but I feel so incredibly guilty for him already missing a week of school. Perhaps it is my old job working with truancy that is coming back to haunt me…Paul always told me it would. I think we’re all just down to bare bones with this tube and illness. We’ll fight back though and I know we’ll get through this no matter what the scope reveals. We were told (or maybe I should say warned) that this process would be a rollercoaster and I would expect nothing less…I’m just hoping it is a short fast rollercoaster.

Take care and enjoy the school pictures!!
Paul, Katie, Mitchell and Sam

Sunday, September 12, 2010 9:41 PM CDT

I will try to update very soon!!!

Wednesday, August 18, 2010 4:19 PM CDT

A backpack. The four of us went to Toys-R-Us today and bought Mitchell a backpack for Kindergarten. At first it was just like any other trip out with the boys, but now as I sit here watching Mitchell nap on the couch I realize it was much, much more than just a trip to buy Mitchell a backpack for Kindergarten.

What does this backpack represent? Life. A life we never knew we’d have. Wow, Kindergarten! I remember when Mitchell was born and in the NICU, the doctors handed us a packet of case studies of children with trisomy 13 as well as statistics. They never were negative about Mitchell’s diagnosis, but they didn’t have to be as it was all right there on those papers that were handed to us. I remember Paul wanting to read everything he could get his hands on (being the science man he is) and as he’d read parts out loud I’d cry and tell him to stop…STOP, I didn’t want to hear it. I didn’t want to hear how these children didn’t make it, what these children couldn’t do, what was “wrong” with them. There were only a couple positive “stories” or case studies. I didn’t want to hear those either. I just wanted to not think about the future and live in the here and now and what I knew then was I had a crabby baby laying in a crib in a big, cold feeling room full of bells and whistles. All I wanted to do was look at him and pretend none of that stuff mattered. Oh it was so hard leaving him at night, though he seemed so “normal”….the statistics…they speak for themselves and they always whispered in the back of my head.

Somehow we got through those first few days, weeks, months, and years. And now…KINDERGARTEN. I’m not sure why or how WE were LUCKY enough to get Mitchell. Life gets so busy and this certainly isn’t an easy life to live, but we’re doing it and I think the best part about it-is we love the life we have. Doctors, nurses, appointments, machines; I wouldn’t trade them for the healthiest kid in the world. Now granted, I wish Mitchell didn’t have to go through all that he does; it isn’t fair-but this is the life he was dealt and the life we were dealt…and you do what you do. Life is exhausting but Mitchell has taught us what life is and what it is all about. We both have become better people because of Mitchell. We have become better parents…because of Mitchell. I’m sure Paul would say he has become a better teacher…because of Mitchell. He has taught us so much more than I had ever thought my child would teach me. AND HE ISN’T EVEN 6 !

So ya, we bought a backpack today and that backpack is just like any other child’s backpack. BUT, that backpack is a symbol that we hit 1 more milestone that those medical books said we wouldn’t hit. Gotta love that! Mitchell-go get em’ bud…the road isn’t always easy, but it is easier when we’re all walking it together…ok running it together. Sorry to get so sappy on ya, just one of those days where you just really look at what you have and who you have in your life. Never take that for granted, NEVER. We are so so fortunate to not only have 2 great sons but to have such a great family backing us up as well as a great group of friends supporting us!

Thanks! And can’t wait to post that picture of Mitchell’s 1st day of KINDERGARTEN!
Paul, Katie, Mitchell and Samuel

Sunday, August 15, 2010 2:07 PM CDT

Well I think that we are finally getting settled in and comfortable with our new situation. Mitchell is doing well and getting use to his new trach and g-tube. The first night was a nightmare and I barely got any sleep. I was a bit worried that this was how it was going to be and started thinking about nursing care. BUT, knowing it was only the first night…it had to get better…right? It did. Mitchell isn’t waking up as much and doesn’t need as much suctioning. He is also keeping his saturations where we want them to be and he isn’t desatting as much. I still sleep in his room and I may just need to do this until we get him off of tube feeds and until he is not needing as much care at night. Unfortunately he seems to be getting use to having someone around him 24/7 and doesn’t even want to fall asleep without someone in the room. I’m sure some of that is some anxiety as sometimes he doesn’t swallow right and it goes down the wrong tube and he coughs and sputters…I’m sure that is very scary. We’ll get there though; he is doing better and better each day. And, we are getting more and more comfortable. It is almost like I’m a new trach mom all over again…except I’m not as “new” to the suctioning, oxygen and all of the medical garb….just the intensity of need. Slowly we will get back to “normal” or get a new normal.

Eating. I’m sure everyone is wondering how the heck that is going. After all, how do you tell a kid whom you have crammed food into his mouth since he was born and worked night and day so he would not be tube fed that he cannot eat anymore by mouth? Well, once again Mitchell has shown us what a strong little boy he is and he has proved to us that he really is an amazing kid. He is doing great with the no eating. We allow him to play computer games when he is getting tube fed and/or when we are eating as a family. We were not sure how to approach this no eating, or we really didn’t even know what to try. So, we took the bull by the horns and tried to be bold. We had him sit with us at the dinner table and allowed him to play computer while we ate. I guess we figured, if it works awesome, if not we’ll try something else. Well, it worked. We only had 1 meal that it was tough and that was everyone’s favorite “Mac and Cheese”. He got upset because Sam had it for lunch, I rocked with Mitchell and we talked and I fought back tears as I tried to explain that the doctor said he couldn’t eat. That was not fun…no way around it. But, since that first day, Mitchell is a trouper. He is choosing to come to the dinner/lunch table to eat with us, he prays with us and he even does “cheers” with his can of formula. Have I ever said we are so so lucky to have such a great kid?! Now he thinks it is a joke and funny when he tries to steel food. He seems to still want it but seems to know he can’t have it. This doesn’t mean we can leave chips on the counter, or food on the table…he’d grab it in a second! But, it seems that he has accepted it. We are so fortunate.

Swallowing. Mitchell still isn’t swallowing his saliva and it to be honest drives me crazy. I know he’ll get it in time and I’ve talked to parents who have had the t-tube with their kids and they ran into the same issue so I know that it is “normal”. Hopefully we’ll get a speech therapist out to help us with some ideas on how to encourage him to swallow. He will once in awhile but not often. The t-tube comes up into his vocal cords so this is what makes swallowing and protecting his airway so difficult. I have no doubt he’ll figure it out though.

Mitchell will start Kindergarten in a couple of weeks!! It is so hard to believe and this little stint in the hospital has almost taken me back to that first year when we were there a lot. It is amazing how those hospital feelings never go away. I found that I still got a lump in my throat and a pit in my stomach every time I walked back into the PICU after taking a break…just hoping and praying there wouldn’t be a crowd in his room. It is an odd feeling and hard to explain, especially if you aren’t familiar with the PICU/NICU experience. A crowd in the PICU is not a good thing as it means your child needs a lot of help and fast. I don’t know that I’ll ever get rid of that feeling.

Back to Kindergarten, unfortunately they have scheduled Mitchell’s first round of appointments on the first week. (of course) I knew this was going to happen as that week just happens to be 6 weeks and that is typically the re-check point. We tried to get things switched around but both surgeons really felt it was necessary to see them THAT week. I hate that he will miss part of his first week but I guess that’s how life is. I will try to get him to school as much as possible but I’m afraid he will miss his share of days this year. My previous job makes this hard to swallow, but I know that it is for a good reason.

I don’t know that there is anything else “new” going on. Both boys are adjusting to being home. Sam is learning all about Mitchell’s new medical upgrades (I guess that’s how I’ll word it). He is now trying to suction his own neck and very very interested in Mitchell’s pediasure. I’m waiting for him to dump his milk onto his stomach as he watches so carefully as I feed Mitchell and I’m sure he will soon try to feed himself like that.

Once again thanks for the support! I don’t know when I’ll update again. Maybe in a week or two to let you know how the swallowing is going.

Take care,
Paul, Katie, Mitchell and Sam

Wednesday, August 11, 2010 7:28 PM CDT

We got home yesterday!!! I will try and get an entry on when I can but we're pretty busy and pretty much just wiped out.

Thanks for all the love and support!
Paul, Katie, Mitchell and Sam

Sunday, August 8, 2010 9:35 PM CDT

Mitchell continues to do well. Today he got a visit from little brother Samuel. He was excited all day and was so happy when Sam finally came. I think Sam was just as excited! Sam liked sitting in Mitchell’s bed with him. I was happy to see that he didn’t appear to be afraid though was a little shy at first. They went for a walk, which they both enjoyed. Mitchell had fun showing off his brother to all of his new friends.

Sadly when it was time for everyone to leave, Mitchell had a tough time. It was hard I think for him to see Sam come with Grandpa and Grandma and then to see him leave with dad….and Mitchell had to stay in the hospital. I really guess I didn’t anticipate this but Mitchell had a tough afternoon. He kept pointing to the door. I told him to tell Dr.Thompson that in the morning and then we can talk about when we can leave.

He really is doing well though. He has the t-tube capped pretty much all day. He has warm mist on his trach when sleeping. This keeps his secretions thin so we wont run into plugging the trach. Mitchell is having a tough time sleeping at night. It is hard to say why. It may just be that he’s tired of being here and just isn’t comfortable. He keeps looking for me in the room as well, so tonight I will be in a sleep room to see if he can sleep better without me in the room. We’ll see how this goes. I’m ok with it but after the sad afternoon he had I feel bad if he wakes up and I’m gone too. But, we’ll see. They can always call me if he is too upset. He is still having an issue with swallowing, but seems to swallow ok at night so he just needs to get some confidence. I’m hoping to work on the swallow once we get home.

I think just as a family we’re just spent. Sam is tired of being shuffled around, though he has handled it really well. Paul I’m sure is tired of driving from Hastings to Rochester from Rochester to Moorhead and Moorhead back again. Mitchell…well, he’s just tired of everything and I think I’m about with him. But, if all continues to go well we hope to get out early this week.

Medically we really have no news. Mitchell really had a punk day at the end of the week-they had done cultures of his trach secretions and it was starting to grow some bacteria. They put him on antibiotics right away and seems like 12 hours later he was feeling much better. I haven’t talked to Dr. Thompson since this so I don’t know what this means as far as the big picture; guessing it just means we’ll go home on antibiotics. There are certain types of bacteria that are more harmful to the graft then others and we’re hoping that if this is one of them, that we caught it early before it could do damage.

It sounds like they will look at taking the t-tube out the first part of October. I’m not sure where we go from there and really don’t want to speculate. Only time will tell…right now we’re just focused on getting Mitchell home and trying to figure out a new routine that works for our family.

Sorry, I still can't get the pictures on! I'll try again later!

Thanks again for the thoughts and prayers,
Paul, Katie, Mitchell and Sam

Saturday, August 7, 2010 10:07 PM CDT

Mitchell’s doing well, I’ll update more tomorrow and hopefully have pictures of Samuel visiting! But for now, here is a picture of Mitchell w/his t-tube. He is busy playing computer so I couldn’t get him to look at me and smile.

Saturday, August 7, 2010 10:07 PM CDT

Thursday, August 5, 2010 9:25 PM CDT

Mitchell went back into the OR today for the placement of his t-tube. The surgery went well with no issues. Mitchell was pretty agitated all day so he got some pain meds to relax him. He played the computer most of afternoon and tried to go for a walk, but he was just way to tired. He was sleeping by 8:00; which was nice because then I got out of the room for a little comfort food at the Canadian Honker across the street. (mmm)

Mitchell seems to be tolerating the t-tube much better tonight and is tolerating suctioning a lot better. I have suctioned him once and it really isn’t all that different, nor is it hard. I think the biggest thing is just making sure that it stays clean, as you cannot take it out to clean it like you can a regular trach. I will go over some emergency cares tomorrow with the NP.

Mitchell seems to be tolerating his tube feeding well. We are in the process of figuring out a schedule that he will be able to have at home. Mitchell will go home on tube feedings. This will be the toughest transition for everyone. I really have not figured out how we are going to do that. I think that we agreed that we would keep Mitchell tube fed per the surgeon’s request. The ENT has been very understanding and knows how upsetting it is for us to do this to Mitchell. She is looking at a surgical standpoint and feels it could possibly do the graft harm if he aspirates, or could also hurt his lungs. Because the t-tube pokes up above his vocal cords it will be very hard for Mitchell to eat safely. Like I said, I think we’ve decided to agree to keep him tube fed and see how it goes. If life is miserable for everyone including Mitchell, we will re-visit this with the surgeon and come up with some different options. We’ll see.

We don’t know when we’ll get home yet…hopefully soon! The only thing that is keeping us here is learning the t-tube and g-tube as well as figuring out if we are going to cap the t-tube or have Mitchell wear an HME. Hopefully we’ll get this figured out in the next few days.

It’s hard to believe that we’ve been here for almost 2 weeks! Mitchell has done so well and I feel like we have stayed sane! It will be nice to get home but will also be hard. I feel so overwhelmed at times; like we are bringing home a different kid. I know we aren’t, but medically it seems like Mitchell has changed overnight. He is still the same kid, he is still very medically stable, but it is just all the learning new skills when we really felt so comfortable with the medical needs he had before all of this. I guess we can just chalk it up to more knowledge and that is never wasted….right? I keep telling myself to keep my eye on the prize. The prize being “the chance to be trach free”. If I focus on that, soon we’ll get use to the “new stuff” we need to do. We know that Mitchell deserves this chance and though there are going to be some things he doesn’t understand or things he gets ticked about, we are going to try and make this transition as easy as we can for him. We aren’t sure that this is going to work, but we know if we don’t do it…he has no chance of living a trach free life. So, chance….here we come!

I will get a photo of Mitchell soon! I’m sure everyone is wondering what this new tube looks like! Hopefully I can get a good picture tomorrow.

Thanks for the thoughts and prayers!!
Paul, Katie, Mitchell and Samuel

Tuesday, August 3, 2010 9:44 PM CDT

Mitchell went back into the OR this afternoon and did great. He went in for a bronch and a trach change.

The procedure went really quick; about ½ hour. The surgeon said that the graft looks good but the airway that it is sitting in is just too weak to allow the graft to heal the way she wants. Because of this she will be putting what is called a t-tube in. This will take place on Thursday and will be done in the OR. A t-tube is basically a trach tube with 2 ends. One part of the tube is just like a regular trach tube that goes down into his trachea. The 2nd part of the tube goes up his trachea so basically his entire trachea has a tube in it. The top part of the tube will poke out his vocal cords so he will not be able to make sounds or eat with it in. Then, like a trach tube, it has a part that sticks out of his neck. There are some challenges with these types of tubes but the only other option is a stint and she feels a t-tube is a better option for Mitchell.

She said that we did not lose any ground but we just ended up adding an extra step. I’d be lying if I said we weren’t a little disappointed. Everything has moved so smoothly, I think we were just both hoping that we could continue the “easy path” instead of taking the detour. But, we try and focus on the positive and I feel there is a lot we can focus on. One being the graft still looks good. It hasn’t moved and is still intact. Two being Mitchell after this entire week was STILL excited to go back to the OR. Three, Mitchell came out of the OR awake and wanting to go for a walk. And four, we are still moving forward.
I think that the hardest part for me is that I know that this will be drug into the school year now and I was really hoping to be done with the majority of all of this doctoring by then. It also means that it will drag into the start of the football season, which is hard for both of us. But, we’ll get it all to work out and he’ll continue to move forward.

We asked about when Mitchell would get out of the hospital and she thought earliest would be mid next week but realistically probably end of next week. It will depend on how he handles the new tube. It will also depend on us being taught how to handle the new tube. There will be new suctioning techniques that we’ll have to learn as well as what to do in emergencies. We also have to make sure Mitchell is tolerating his tube feeds as well as that we know how to do the tube feedings. Lots of new things to learn.

Thanks again for all of your support,
Paul, Katie, Mitchell and Samuel

Monday, August 2, 2010 9:06 PM CDT

We made it! 1 week post-op!! I remember last week saying, "I just can't wait until we are done with this first week." Overall this has been a pretty "easy" stay. I say "easy" because I was expecting A LOT worse. I was expecting many more scary times and we have had very very few. Mitchell has done great! I know I keep saying that, but he really is doing so well. Today he got out of bed and walked around the unit 3 different times. He really enjoyed being out of bed and walking around.

We are still having some issues with his tube feedings. He did great with continuous feeds but they are trying to get him to bolus feeds. This means that he sits down and "eats" (through his tube) every few hours. This would be easier with Mitchell's crazy running around life style vs. being "hooked up" eating all day. Hopefully we'll find a formula or schedule that works well for him. We're working on it.

Mitchell will go into the OR tomorrow for another scope. The ENT will check his airway to see how the graft is healing and to make sure it hasn't moved around any. They will also change his trach tube. That is pretty much "the plan". If there is an issue with the graft she may do some work to try and fix it, but we aren't expecting a long surgery. He probably wont go in until later in the afternoon so I probably will save the update until late tomorrow.

Thanks again for the thoughts, prayers and messages. Mitchell could use some good thoughts tomorrow. We are praying that the graft looks great and there is no work needed. We'll see how it goes.

Thanks,
Paul, Katie, Mitchell and Samuel

Saturday, July 31, 2010 8:38 PM CDT

Mitchell is still really doing well. They took him off of sedation on Thursday and much to our surprise he woke up great. He didn’t have the thrashing that we had expected. He has been pretty tired and calm which is just what we want him to be. He has had little pain and has really handled this well.

Today we have given him some extra pain meds. It seems that he might have a little more pain than before but still not nearly as much as you’d think. He is also refusing to swallow all of a sudden today. There could be many reasons for this. He could have a little bit of a sore throat or it could feel a little different from his nissen that he had. We’re of course hoping that this is a temporary problem. We’ll see how tomorrow is. He seems to be acting the same way he did right after he got his tonsils out. This makes me think that he is having throat pain.

His breathing has been MUCH better today. He was off of CPAP most of the day but will be put back on it at night. He has done well without it. He is still on a little oxygen, but his saturations are great. They are choosing to keep him on a little extra oxygen because he will be going back into the OR on Monday or Tuesday and they want to make sure that he isn’t having to work too hard to oxygenate himself.

Today we got a couple big smiles from Mitchell. Nana, Papa, Aunt KT and Uncle Jeff visited today. Uncle Jeff got a big smile…the first since surgery!! Tonight we Skyped with Grandma, Grandpa and Sam and they surprised Mitchell when Great Grandpa got on…he got the 2nd big smile for the day and since surgery! And of course Mitchell laughed when Sam got into trouble because he was touching the keys on Grandma’s computer!!

Overall everyone is doing great! Sam has had fun being passed between Nana and Grandma. Paul and I have been trying to do our best with being here as much as we can but also getting a break by getting out of the hospital. I don’t know that I’ve ever felt more comfortable leaving Mitchell. The staff here is great and the level of care is amazing. I got a chance to see a good friend that I have not seen for a long time. We were able to go out for supper. It really was an awesome release for me. (Thanks Melissa!) Paul was able to run up to Moorhead for a couple nights to get some things taken care of at home. He was also able to make it to the last football camp night before the season starts so he was very happy with that.

I know we keep saying it, but we can’t thank you enough for all of the love and support we’ve felt the last week. (And prayers) We certainly couldn’t do this without you!

Thanks!!!
Paul, Katie, Mitchell and Sam

Thursday, July 29, 2010 9:03 AM CDT

Mitchell is still really doing well for what he has been through. He had some on and off tough patches yesterday. They've been doing chest x-rays and he is getting some haziness in his right lung. This is expected, as he has been lying on his back since Monday unable to cough or move. They feel that it doesn't look like pneumonia but more of some collapsing of that right lung. We had this same issue when he had the aortapexy surgery in October so it really isn't all that surprising.

Last night we ran into a small glitch when Mitchell was requiring 100% oxygen and only getting up to 90% sat. This is a lot of O2 for anyone but Mitchell this is a HUGE amount so for us it was pretty concerning. The ENT (surgeon who did the surgery) came in and scoped him bedside and found that he had a HUGE mucus plug in his lower right bronchial. It was truly amazing to watch her trouble shoot and if I had any questions if we picked the right ENT (which I really haven't) that answered my question right there. She was naming off supplies she needed and said, "One thing I've learned with airway reconstruction is you need to be creative." She proceeded to figure out how she was going to get that plug out, as his trach is so small she can't get the scope and suction down at the same time. I swear this lady was "Dr MacGyver". It was neat to see. Mitchell did his part as well as he coughed and together they got the plug out. His saturations improved dramatically though they still felt he needed to be put on CPAP to help keep everything open.

We were having some real big issues with breathing rate. Though they seemed to be ok with them because all of his "numbers" were coming back ok...sats, heart rate, blood gas. I myself am a little uncomfortable with my son taking only 6-10 breaths a minute. Yes, a minute. But, as they pointed out...when he did breathe he took a HUGE breath. (This was all before the big plug)

Because of the breathing rate being so low they did decide to switch sedation meds. The problem with sedation meds (many of them) is they can suppress respiratory rate, which obviously was the case with Mitchell. This is all pretty "normal" but Mitchell seems to be a bit more sensitive to this. They new drug worked amazingly. Even though he needed a lot of oxygen, he and his numbers and his breathing looked A LOT better and I felt WAY more comfortable with how he was breathing. He is breathing more normal now and that is comforting.

Our plan for today is we are going to try and wake him up and see how he does. There really is a happy medium, if he wakes up he might thrash around and harm the graft but he'll get the junk in his lungs moving around which is what he needs. We want him to cough...but not too much because that could also hurt the graft. It really is a balancing act. So, we'll wake him up and see what happens. Our goals for Mitchell: Get him awake but keep him comfortable and hope that waking him he will require less oxygen support. Poop! Mitchell needs to poop. The other problem with sedation drugs is it causes things to stop down there so they'll give him some meds to help move things along. Getting him awake should also help with this. They are taking his feedings very slow because of this.

We are EXTREMELY impressed with the care Mitchell has gotten. The nurses here have been great and really just FANTASTIC. I have never felt so confidant and comfortable leaving Mitchell. Because we knew wake up time was coming, Paul and I got a hotel room last night and got a really great night sleep! It was great to sleep and know he was in good hands. I also have to say his ENT team is great. I really just can't say that enough. We picked the right surgeon to go through this with that's for sure.

Thank you for the thoughts and prayers! The support is great and we can't thank you enough!! OH-and Sam is doing GREAT. I got a chance to pop up to Hastings for a couple hours yesterday to get some Sam time. It was great to play with him and just hug him.

Maybe I'll get a chance to take some pictures, we'll see I have a feeling it'll be a busy day.

Take care,
Paul, Katie, Mitchell and Sam

Thursday, July 29, 2010 9:01 AM CDT

I will try to get an update though sounds like we'll be waking him up today. Hopefully I can add more later. He's doing well though.

Tuesday, July 27, 2010 10:20 AM CDT

Mitchell is doing great!! It was a long day for everyone yesterday. Mitchell’s check in time was 8:00 and they brought him back to the OR at about 12:00, surgery started at about 12:35. They expected the surgery to take anywhere from 6-10 hours and they did not disappoint. Mitchell got out of surgery around 10 and got back to the room around 10:30ish. It was all a little overwhelming, so many people in the room but he really looked awesome. We couldn’t have hoped for him to look any better. I was a bit concerned about his retracting while breathing, but they gave him some meds and it seemed to help. He is still retracting a bit but we’re hoping that that subsides throughout the day and as he heals breathing will be a bit easier.

The surgeon really was almost giddy coming out of surgery. She seemed extremely pleased with how things went and said that there were absolutely no glitches. She harvested the cartilage from the rib and did the graft. He has a “new” trach tube. This is below where the old one was as that is where she did the graft. The new trach is a lot smaller than the old one though you wouldn’t know it by just looking at him. His old trach was a 5.0 and this new one is 3.5. I know for those who haven’t seen a trach it doesn’t help to picture, but believe me, it is a lot smaller. She said that it went so well that she didn’t even have to use anything to stint the airway open. This was a big surprise for us; I guess I just figured he’d have a stint in. It sounds like this is fairly common for how she does this surgery.

Mitchell also had the nissen as well as the g-tube placed. The surgeon was by this morning (this is a different surgeon then the one who did the reconstruction) and he said he was pleased with everything. They will start feeding him via g-tube as soon as the ENT gives the go ahead.

Mitchell is resting comfortably and though he has a long way to go, we are so pleased with his progress so far. The hard part will be when they decide to let him fully come out of sedation. He is an all or nothing kid-he either has to be able to move around, or he’ll have to be knocked out…so the next few days should be interesting.

Paul and I are doing well. The PICU has a couple of sleep rooms and we were able to get one last night. It was tough to leave Mitchell alone, but I knew we really were right around the corner and there is a phone in the room if they/he needed us. I can’t say we got a great night sleep, but better than had we stayed in his ICU room. I will probably stay here with Mitchell at night and Paul will go back so Sam can see at least one of us. Which brings me to Sam…many probably don’t know but he ended up getting Hand, Food and Mouth disease on Friday. (My boys have GREAT timing!) It was extremely hard leaving Sam. Definitely a time where I wish I could be 2 places at once. Sam is doing well though and I think each day should be easier on him. The biggest thing is he has a lot of sores in his mouth and that is pretty painful.

Back to Mitchell: The plan is to keep him fairly sedated today and they will re-evaluate this afternoon. He has a catheter and that will probably come out this afternoon. He also has a small drain tube in his chest and neck. The chest one will probably come out this afternoon. This isn’t like the one he had when he had the aortapexy, it is just a small one that doesn’t go in as far...but it’ll be nice to get it out.

His first new trach change will be in a week, so that will be Monday. This will be done in the OR and I’m assuming he will have a scope at that time as well. (Though I don’t know for sure)

I think really that is all I know right now. Mitchell still has a trach-which we expected. This trach will remain in until his graft heals well and they are confident he could breathe well without the tube. We do not have a time frame as to when we will attempt getting the trach out, there is just too much to look at to speculate. So, we take one day at a time and each step at a time.

We thank everyone for your prayers and messages on Facebook as well as Caringbridge and our phones. It really help us through the day yesterday. It is so nice to see that we have such a big support group…even if we haven’t officially met all of you.

A few cool stories before I end for this morning. As I’m sure you can imagine sending your kid to a 10-hour surgery is not the best 10 hours of your life. I think the toughest was the first couple hours and last few hours. I really appreciated my Aunt Jeanne’s FB post that it was my Grandma’s Birthday yesterday. I’m not good at keeping track of that, but she would have been 75 yesterday. A very good omen I think and I found that comforting especially at the beginning of surgery. Then towards the end of surgery Paul and I decided to get out and walk around outside. We went for a long walk around the hospital. Paul looked down and saw a huge agate. Paul’s Grandpa use to collect and polish agates; it was one of his many favorite hobbies. So, we definitely felt that Mitchell had 2 very special guardian angels with him yesterday.

This morning the nurse that brought Mitchell back to the OR stopped by. He said that he left the OR at 5:00 but really wanted to come and see him this morning to see how everything went. He said that Mitchell was great going back to the OR. He laughed as he talked about how he was giving everyone high 5s and showing George off to everyone. (His stuffed Curious George goes with him to the OR) The nurse said that Mitchell really is a neat kid and he just really had a lot of fun with him before they put him to sleep. Mitchell evidently just soaked up the attention from the 10 people in the OR. (Big surprise huh) We know he goes back to the OR easily but it is really nice to hear how much they like him and how much fun they have with him…especially right before he goes under. It is definitely a comfort.

Again, thank you for all of the thoughts and prayers. We certainly can feel the support and it means the world to us. I posted new pictures. The Front picture is the night before surgery. After a HUGE meal and Nana and Papa’s, we went down to Rochester to stay in a hotel. Our “plan” was to take Mitchell out for ice cream for a treat but Paul jokingly mentioned Buffalo Wild Wings and there was no going back. Mitchell ate an entire kids meal and played trivia. We had so much fun!
I will update again when I know anything new. I’m guessing it’ll be maybe tonight or maybe tomorrow morning.

Take care,
Paul, Katie, Mitchell and Samuel

Monday, July 26, 2010 11:23 PM CDT

Mitchell is out and doing well! He really looks great! More tomorrow.

Monday, July 26, 2010 2:47 PM CDT

Mitchell went into surgery at about noon today. He was looking good and in good spirits...giving the nurses high fives as he was going back. It is never easy to see him go back but I have to give the kid credit...he makes it a lot easier. I don't know that we could do this if he went back kicking and screaming.

So now we sit. We are able to wait in a temporary room so we really can't complain. We have a tv, bed, lounge chair and another couch/hard bed. So far we've both gotten a nap, watched Days of our Lives and also CNBC. Exciting stuff here.

They will keep us updated every couple hours but the surgery will take anywhere from 6-10 hours. So far we've been called once to let us know that they are finished scoping him. We're waiting for the next call to say they are finished with the GI procedure. (nissen and g-tube) Lastely, they will do the reconstruction. Mitchell will then be sedated for a couple of days, possibly 3. This is so he gets a head start on healing and they just don't want him moving. (not moving and Mitchell don't go in the same sentence)

I probably wont update this site again until he is out of surgery. If it gets to late and I'm to tired I may just do a 1 sentence update saying he's done and then expand more later.

Thanks for all of the prayers...we certainly can feel them.

Take care,
Paul, Katie, Mitchell and Samuel

Tuesday, July 20, 2010 7:47 AM CDT

This will probably be our last entry until the surgery is done. The LTP is coming fast and it is hard to believe that we’re really doing this and that it’s here.

Our appointments went as planned and there were no new surprises. Mitchell will need the reflux preventing surgery and they will do that at the same time as the LTP. He will also get a g-tube (feeding tube) put in his stomach at this time. Just because he has the G-tube doesn’t mean he cannot eat by mouth, though the surgeon said that she will probably say he can’t for about 2 weeks as he is healing. We pray that it will be no longer than that as Mitchell’s LIFE IS food..for those who know him…you know what I mean.

Mitchell’s allergy tests came back and he was negative for both penicillin and amoxicillin! He’s actually on amoxicillin right now and doing well! This is a big relief!

We ask for a lot of prayers next week for Mitchell and our family. He is in good hands and I know they will take good care of him. We will be updating Mitchell’s Caringbridge site probably everyday and possibly more than once a day.

Thanks for the prayers and support!
Paul, Katie, Mitchell and Samuel

Monday, July 5, 2010 9:04 PM CDT

First of all-Happy 4th of July!! Hard to believe that we’ve already made it ½ way through summer! I have a lot to update on so this may end up being a long one.

Mitchell had another bronch. This will be the last one before his big reconstructive surgery. The surgeon wanted to take 1 last look at his airway before she made her “game plan” on how she was going to go about the reconstruction.

The bronch showed nothing exciting…just the usual collapse, which we had expected. I will try and go over what the thoughts are for the surgery as well as what the challenges may be.

Mitchell still has a good amount of collapsing down in his left bronchial. This is the one area that will be challenging after the LTP (reconstructive surgery) is complete. She cannot work on this area and Mitchell will hopefully just be able to muscle his way though life with this collapse. The thought is-he is doing ok right now with this collapse and this is below the trach, so technically the trach is not doing anything to “help” him with the collapse. Therefore, the thought is that hopefully he’ll be able to handle it the same without a trach, if the LTP works. We “think” Mitchell should be ok while he is awake, however are looking at ways to help him when he is asleep. One thing the ENT talked about was possibly putting Mitchell on CPAP. “IF” trach free, this would be done through a mask. She also discussed talking to the cardiac surgeon again and seeing if there was anything more they could do to help open that bronchial up a bit. The aortapexy Mitchell had about 7 months ago helped a lot, but the pulmonologist and ENT wonder if there is more pressing up on the trachea. Just so happened that one of the cardiac surgeons were in the OR when the bronch was taking place so she showed him Mitchell’s airway. He and the other surgeon (who did his aortapexy) were going to review his case and see if they thought there was anything else they could do to help. We will know the answer to this at our next consult appointment in a week or so. Though we would think that Mitchell should be able to handle the collapse on his own, mainly because he is right now; if there is anything more we can do to open up that airway, it will give him that much more of a chance.

The area that the ENT will be working on is the area right where his trach is. I think I had briefly described the surgery in a previous post, but I will do it again. She will be doing what is called a double stage LTP (laryngotracheoplasty). Here is a picture of what will be going on and a description, though it will be a little different than described here. http://www.tracheostomy.com/resources/surgery/ltp1.htm
In Mitchell’s case, the ENT will take and graft part of his rib in Mitchell’s trachea. The area that will be covered will be approximately 3 cm. At this time she will take his trach out because that is the area that needs to be “fixed” and she will give him a new stoma. This will be either above the graft or below. (she will not know until she starts) This is where the “new” trach will be. The reason she is doing this is because A. the old site is what she needs to fix. And B. she wants to put in a much smaller trach so the hole will be smaller and will hopefully close on its own, once/if they decide to take the trach out. Mitchell will have the graft as well as a stent put in where the graft is. This will be sewn into him so it does not fall out. He will come out of surgery and it sounds like she will keep him sedated for 2 nights. This is to give the site a head start in healing before he starts to move around. This graft is very sensitive and just about anything can mess it up so it doesn’t “take”.

I can’t give you a percentage of success as this really is such a case-by-case surgery. I can say that I “know” many kids through the trach message board online who have had this surgery and have gotten their trach out because of it. However, Mitchell is going into this with a disadvantage because he will continue to have the collapse in the left bronchial. This “could” be a potential reason he would need to keep his trach or need to be re-trached if he ended up having issues. He also has a history of aspiration (swallowing wrong and getting food down his windpipe) which could also cause him to need his trach. At this point the ENT doesn’t feel that Mitchell shows enough aspiration risk to keep the trach because of that alone. That said, sometimes after this surgery kids have a tough time with their swallow, so again this puts Mitchell a little more “high risk”.

With Mitchell’s disadvantages, the ENT still feels that it is worth a shot and she feels that it really is a good possibility that this will work and Mitchell will be able to eventually get his trach out. Paul and I are going into this with the opinion of if it works, THAT’S AWESOME…but if it doesn’t, we know we tried.

There are still some tests we are waiting on that may change the surgery a bit. One test is the recent PH probe we did. This is a 24-hour test where Mitchell had a probe/tube up his nose and down to his stomach that measures how much reflux he has. This test will determine if he needs to have a nissen fundoplication. This is where they basically flip the stomach around the lower esophagus so that it is harder for your acid to come up. We have been told about this surgery when Mitchell was in the NICU however we really have been not in favor of it, though at this point it may be our only option. IF Mitchell would need this “stomach flip” (which is what I call it), they would also put a G-tube in him. This is a stomach tube for feeding. I know that I’ve mentioned this before and it really is hard for us to accept. BUT, it would be temporary and looking at all the options it may be our best option. Mentally and realistically I know that this is probably what we “should” do and what is best but emotionally and out of principle, it is really hard for me to accept. It mainly is because we have worked SO hard at keeping him from having both the “flip” and the G-tube. If Mitchell doesn’t need the nissen, he probably wont get the G-tube. I’m guessing that this is probably because they really can’t justify it insurance wise “just” for the sake of the reconstruction surgery. If this happens he will end up with a NG tube-which is a tube up the nose. (he had this for a short time after trached)

Like I said earlier-we are also waiting on the opinion of the cardiac surgeons to see if they feel there is anything more they can do to help his lower airway. If they feel they can, we will need to discuss what that is and how it will fit into the big picture. At this point I do not know if this will or will not change the date of the LTP.

We are also waiting on a penicillin allergy test. Obviously I hope that this test comes back negative. Hopefully I will know this week.

Lastly we are waiting on some cultures they took during this last scope. During our next consult they will tell us what our plan is as far as trying to keep bacteria at bay during this procedure.

I think that is it. Thanks again to those who have supported us through this journey and also those who keep us in their prayers. Mitchell is really such a super kid and each time we go down to Mayo I appreciate him a little more as he seems to surprise me with his strength. What kid do you know that has doctors and nurses poke and prod him and he still leaves the room signing, “thank you”. He is a kid whom loves life and deserves every moment of happiness that comes to him and then some. We ARE so fortunate.

I will probably update in a couple of weeks. His “big” surgery is at the end of the month.

Thanks for the prayers,
Paul, Katie, Mitchell and Samuel

Monday, July 5, 2010 1:25 PM CDT

An update will be up shortly...today or tomorrow.

Sunday, June 6, 2010 9:29 PM CDT

Mitchell is home and healing well after his tonsillectomy. Mitchell had his tonsils out on Tuesday down at St.Mary’s Hospital in Rochester. The surgery went well and he has done well recovering. He has had a tough time with only being able to eat soft foods. Mitchell’s favorite thing to do is eat and it really has been tough on him not being able to eat what he wants as well as having it hurt so much to eat. For the most part he has done pretty well though. We have had a few “medicine wars” where he refuses to swallow his pain medicine. He is incredibly stubborn as am I so you can imagine how we butt heads with this. I have to remember that sometimes if I just don’t make such a big deal out of it, he wont…and yet sometimes it just doesn’t matter and we go round. In the hospital the nurse and I sat with him for an hour trying to get him to swallow. It really was pretty crazy. Since we’ve been home we probably have the “fight” once a day…it’s interesting.

So, step 1 is complete we just need to finish recovering. The next step is to repeat the Ph probe we had a couple months ago to see where his reflux is. We are praying that it is under control with the increased meds. If we find that it is not, he will need to have a procedure that will stop reflux. We have tried to avoid this surgery but we may not be able to; only time will tell. If he needs this surgery, I believe that they are going to try and pair it with the reconstruction surgery of the trachea. I’m not sure about this, but that is what it sounds like. While we are there for his Ph probe we’ll also have some drug allergy testing. Mitchell will be on and off many different antibiotics in the next few months so we need to make sure we know what he can and can’t have.

After the Ph probe we have a few weeks off and then we’ll have a consult with the ENT. This will be the final meeting before the scheduled “big surgery”. At this time we’ll sit down and they will talk to us about what to expect as well as explain what the “plan” is. As of now we are looking at the LTP (Laryngotracheoplasty). There are still a few things along the way that could catch us up a bit and make us not have this surgery, but so far so good. We’ll just keep praying all goes well.

We still have a long road ahead of us but we just take 1 step at a time. Mitchell continues to be a trooper through all of this. We’re so lucky to have such a strong willed little guy. We’re also very fortunate to have such great friends and family who have been so supportive with calls, cards, helping with appointments and just moral support. We wont be able to make it through the summer without you and thank you just doesn’t seem to cut it. We do really appreciate all of the support.

Other than doctoring, Mitchell has been going to school and doing really well. We had his transition meeting into Kindergarten. Can you believe it? It still seems just like yesterday we were just trying to figure out how we were going to take care of this little baby with so many special needs, and now we’re sending him off to Kindergarten. We’ve made it a long ways that’s for sure.

I will update again further into the summer. I’ll try to put up some new pictures as well. I haven’t been very good at taking pictures lately, but I’ll see what I can do in the next few weeks.

Thanks again for the support,
Paul, Katie, Mitchell and Samuel

Saturday, June 5, 2010 6:38 AM CDT

New update very soon!!!

Wednesday, May 26, 2010 8:05 AM CDT

Just a quick update. Mitchell was suppose to have his tonsils out a couple weeks ago...but to make a long story short there was a scheduling problem at Mayo and Mitchell was unable to get his tonsils out. SO, we have rescheduled the surgery and it is coming up SOON. So, sorry but could you extend your prayers a little longer? I'm hopeful that he'll do well with this surgery though a little nervous about the recovery and safety of his swallow...but I guess we'll just have to wait and see how he handles everything. Ever since we got home from "not getting his tonsils out", Mitchell has been asking to go back. We evidently had too much fun that trip. He brings me his bag and says, "hospital" on his talker. I'm thankful that he loves the hospital so much and pray that this summer doesn't change that as we'll be there A LOT and for some pretty serious surgeries.

I'll update in a couple weeks after Mitchell gets home after his surgery. Thanks for checking in and the thoughts and prayers.

Paul, Katie, Mitchell and Samuel

Sunday, May 2, 2010 8:17 AM CDT

Nothing really new to report. Just wanted to ask for some prayers the next couple weeks. Mitchell will be going in to get his tonsils out. We're hoping for a safe and quick recovery. I'll update again in a couple of weeks.
Thanks for the prayers,
Paul, Katie, Mitchell and Samuel

Tuesday, March 30, 2010 8:58 PM CDT

I guess I just decided to write a new entry. So, if you are reading this and seem totally lost-you probably missed the last entry that I posted-which was last week.

I talked to the NP from the ENT department today about Mitchell's tests they ran during the bronch. The biggest test was for lipids in his lungs. This would tell us if Mitchell is aspirating a lot. The lipids test came back normal-or little to no lipids in his lungs. This is GREAT news and very very comforting. They also checked the bacteria in his lungs. He came back pretty clean on this but did grow some yeast. Nothing to get excited about right now but will re-test closer to the reconstruction and if anything grows he'll be treated for it. I also talked to the GI doctor about the PH probe he had. This was to measure how much acid reflux he is having. Mitchell actually tested "normal" on this as well. However, "normal" still means he has reflux. Typically this would be fine but with him getting set up for the reconstruction surgery, he has to have NO reflux. The GI doctor felt that it "should" be enough to just increase his previcid. I asked her about the nissen surgery and she felt that at this time it would be a little extreme but wouldn't count it out. She thought we'd first try the increase of meds and then we'll repeat the Ph probe test in 3 months to see how he's doing with the reflux. She also tested him for lactose intolerance. Long story short-he had been showing some pretty big signs of it and then we limited his dairy and he seemed to get better. The test came back negative, which is also great news!

Our plan continues and we are starting to put some dates down. We're looking at getting Mitchell's tonsils out in May. June we will be looking at the reflux again and repeating the Ph probe test. Then, if all looks good we'll do the reconstruction in July. I'm sure this will change somewhere down the line as there are many many details they need to look at before he is 100% ready for that surgery. The most important thing is that we get his body as ready as possible. There are many different things that can make the graft not take and she needs to make sure that we are controlling what we can to make this work. I will update when we know more, but probably wont be until after the tonsil surgery in May. I'll probably try to update some pictures in the meantime.

Thanks for all of the support,
Paul, Katie, Mitchell and Sam.

Thursday, March 25, 2010 1:03 PM CDT

I’m really going to try and keep this short, but there is so much information to pass along, I know that it’ll be a long one.

Our first trip down to Mayo was mainly for a few consult appointments and a couple swallow studies. We have to make sure that Mitchell isn’t aspirating when he is eating and drinking. We do know that he is aspirating from time to time, but we are trying to figure out how much and why. Well, the first test was a total BOMB. We’ve been through a lot with Mitchell and I think that this test is up there on the worst things we’ve done with him. (and to him) I sat in the chair with Mitchell on my lap, my legs around his and my arms holding his. This was so that he couldn’t get away while they put a scope up his nose. He has had this before and he has never tolerated it well. (nor do I ever expect that he will) Then they told him to drink, while a nurse held his head so he didn’t jerk away from the scope. Now they tell me that this is a pretty accurate test however I just can’t see how it can be. Mitchell aspirated EVERYTHING he swallowed. For a brief second I thought that he has swallowed correctly as everything went the same place…and then he started coughing. He recovered; another drink (yes being held down) and it went into the same spot. I looked at the ENT and said or maybe yelled, “that’s major aspiration!” She looked at me in horror as if she wanted to say, “UM…you feed this kid?” He probably did about 3-5 swallows. I really don’t remember as I was in horror while watching him basically cough and sputter. It was horrible. Finally the ENT said that we had to stop. The good news with all of this is that Mitchell was coughing and bright red. This means that he knew he wasn’t swallowing right and that he was trying to get it all out. The liquid was colored and was coming out his trach pretty much as soon as he was drinking it-he was coughing that fast and hard. I left that study mad, confused and horrified at what I just watched. I was so shaken that I felt like I needed to talk to his pediatrician about the experience. Thank God we have him. He called me after clinic hours to calm me down and reassure me that Mitchell can’t be swallowing like that or he would always be sick (and really sick). The Mayo team immediately set up a barium swallow study, which isn’t as invasive to make sure that he could swallow correctly. The next morning we went in and he did GREAT. They had no issues at all with his swallow. The speech pathologist said that rarely do they have a child who does so completely opposite on the 2 tests, but it was clear that Mitchell just did not tolerate the first test and that it wasn’t a “true” showing of what he does. SO, feeding status is he safely can eat. I always try and find something good that comes out of these tests and I can say that this test opened my eyes. I always knew that Mitchell was high risk for aspirating, this test just showed me how easy it is for him to swallow wrong. We do need to be careful.

She also put the scope down his trach. This was to take a peek at his bronchial to see if we could see any difference since he had his aortapexy in October. THERE WAS SIGNIFICANT IMPROVEMENT! It was amazing to see!

The next visit was for a scope. This was to again take a look at Mitchell’s airway while he is sleeping. I guess I’ll try to explain this in parts.
Nose-Mitchell’s nose is extremely inflamed and red. He also has some nodules up in the nasal cavity. We are going to start him on an inhaled steroid to see if we can alleviate this.
Throat/mouth-Mitchell has pretty big tonsils and will need them out. The great news-his tone in his mouth is great! I think the ENT was surprised at this. Typically a child with a syndrome like Mitchell’s has low tone, which means their tongue can easily slip back in the airway. She sees that Mitchell has good tone. Yeah!
Trachea-still a big collapse where the stoma is. This is damage he has gotten from having a trach long term. He is more susceptible to damage because his cartilage isn’t the strongest to begin with.
Bronchial-Mitchell’s bronchial that was almost completely collapsed is now open! This is due to taking the pressure off of it from the artery. His other bronchial isn’t completely open, but it isn’t horrible either. She said that this isn’t a factor for keeping the trach as the trach doesn’t do anything for it anyway. So, lower airway looks ok.

I guess the question is, what does this all mean? It is hard to exactly say what the plan is because we are still waiting on some tests. This is all very difficult to explain and nothing is certain as any “hiccup” along the way and our “plan” changes. So this is what we know as of Monday…

Our first step is to get Mitchell’s tonsils out. This will happen in April sometime. (we’re still working on dates) They will also take out a nodule that they feel is “in the way” of mouth/nose breathing. They have decided for now that we will keep the adenoids as taking adenoids out in a child with a cleft can cause other issues. We will watch him after that surgery and continue to monitor his swallowing. We are anticipating a slight setback swallow wise though the ENT feels that any aspiration problem would be short term. We know that Mitchell is maybe a little more at risk for this. However, it is typical for children to have swallowing issues after this surgery. During this surgery we may or may not have a procedure called a Nissen fundoplication. This is where they basically flip the top of the stomach around. The point of this is to control his acid reflux. (this would be if his PH test comes back bad) It is very important for Mitchell’s reflux to be in check before proceeding because reflux can undo any reconstruction he may have to his airway in the future. If Mitchell has the nissen he may also end up with a G-tube during that surgery. This is a feeding tube that they put in the stomach. Now before everyone freaks out. (as I did when she mentioned this) This doesn’t mean Mitchell can’t eat. There would be a few reasons for this G-tube and I just can’t go into them now but they are valid and it is important to know that this would be temporary. I’m not really sure about this yet so I’m not going to go into it too much. We would be asking MANY MANY questions before we’d go down this path but it certainly is a possibility. We aren’t too focused on this right now, no use in stressing until we get that test back.

After his tonsils are out and we get the reflux/g-tube/aspiration thing figured out, we will start to look at possibly reconstructing Mitchell’s airway. There is a procedure that our ENT does that may make it possible to get Mitchell’s trach out. The procedure is done by taking rib cartilage and grafting it into Mitchell’s trachea. (LTP) This would hopefully “fix” that area of the trachea that is weak and floppy due to having the trach. There are a couple ways she can do this and the exact procedure and how long it’ll take is in discussion. What we know right now is this is a possibility and she is “penciling” Mitchell in for June. Again, I continue to say this because I don’t want people to just assume this is going to happen and that the trach will come out.

This isn’t an “easy” fix and we can’t expect that he’ll have this surgery and bam…he has a perfect airway. What this does is gives Mitchell a chance to possibly be trach free. There are so many questions that can’t be answered until we are doing it and we can see how he reacts. The doctor reminded us that Mitchell has and will always have chronic airway problems but she does feel that there IS a possibility that he could be safe without his trach given this surgery is a success. After hearing last fall that they thought his trach was for life, this is huge for us. It isn’t that I’m saying, “yeah-we’ll be trach free!” It’s me saying, “yeah-we have a CHANCE” That is all we’ve really wanted is for Mitchell to have a chance. This may or may not work, this may change after our next visit but for now…we are very happy for Mitchell to possibly have this chance. It also makes us feel like we have done everything we can to help him become trach free and if for some reason it doesn’t pan out, then we know that we tried.

A lot to take in isn’t it? I debated on if I should share it all, but I figured hey-I’m sure you’ve been wondering where we’re headed with all of these visits. We have been talking about this the last few visits but it has been really up in the air. This last visit I really got the feeling that she (the ENT) truly believed that this could happen. She is a very cautious doctor, so I have no doubt that if she does not feel it is safe, she will cancel it all. This is why I continue to say that anywhere along the line our plan can change so it is very important to not get ahead of ourselves and not get too excited. All we know is that our family will need a lot of prayers and support the next 6 months. As the doctor said, this is going to be a roller coaster. We'll have ups and we'll have downs and probably some scary times...but we'll get through it together. So that is it for "the plan". Onto the overnight stay-

Many know that Mitchell was admitted during all this hoopla down at Mayo. This was to simply observe him during his PH test. This test consisted of a tube down his nose that measured the acid reflux. It had to stay put for 24 hours and after his reaction to the tube during the swallow study, they decided that they wanted to watch him in the hospital. This was our first ped floor experience. Mayo is a teaching hospital so there are doctors everywhere and it’s nothing to have 10 or so doctors going in and out of your room. Yikes, a lot, but they were all very nice. During morning rounds we had the pediatrician and 3 residents in Mitchell’s room. At the end I asked if he had cared for any children with Trisomy 13. He said that he had but never a child with the mosaic form and never a child as high functioning as Mitchell. I said that I didn’t like Mitchell to be a spectacle but that it was important for us to share him with the medical community as we feel they need to see how well these kids can do. The residents asked questions about Mitchell and his birth, and the pediatrician thanked me for being so open. The pediatrician beamed as he said that Mitchell certainly is a special little boy and he felt lucky to have met him. Oh, I forgot to mention he had walked in earlier and Mitchell looked at him and went to his talker and said, “I want to go home.” Can’t say the kid doesn’t know what he wants.

I will add the results to the tests as we learn them. I’m hoping to know by Friday. Again, I’ll just add them after the closing so you don’t have to do through the entire entry.

I do want to close with a special prayer request. I know that I have asked for you to pray for KT’s good friend Karie. She was diagnosed with inflammatory breast cancer when her daughter was just 6 months old. I’m so sad to report that Karie lost her battle this week. Karie fought hard for 3 ½ years. Our families met when Mitchell had his first visit to Hastings and it was a great time. My heart aches for her husband and her 2 little kids. Please say some prayers for them that they will have the strength to get through this horrible loss. Please pray for both friends and family, there are so many aching hearts right now. I have posted the picture I have of Karie and Mitchell.

Take care,
Paul, Katie, Mitchell and Samuel

Tuesday, March 23, 2010 7:27 PM CDT

I'll be updating soon-hopefully a new entry will be up by the end of the week! Lots to share!

Saturday, February 27, 2010 9:42 PM CST

Just a quick entry as really not much has changed. We’ve just been coasting through winter trying to stay healthy. I hear that this has been a challenge for many this winter. We have been fairly lucky. We have dealt with colds here and there but really nothing to get excited about.

School has been going well for Mitchell. Recently he has started playing with another child who uses a speaking device. They “talk” back and forth and play Go Fish. Mitchell really has loved this experience and when I first asked him about it he beamed like there was no tomorrow. It was as if he was saying to me…”Mom, this kid speaks my language!” It was nice to see that satisfaction in his eyes.

We’ve been watching the Olympics whenever they are on and Mitchell really enjoyed watching the figure skating. He likes to do spins in the living room-it’s pretty funny. Today we went to Paul’s cousin Andrew’s hockey game as they were in the FM area. Mitchell walked into the arena and he lit up! I knew exactly what he was thinking, “MOM-I’m at the OLYMPICS?!” (I swear that was the look on his face.) “Nope we aren’t watching the Olympics but it’ll be JUST as fun.” The boys had a good time and it was really nice to see Tony, Lora, Madison and Andrew…even if they beat Moorhead in a shoot-out.

It’s hard to believe that March is already here. We have a busy March planned. We’ll be headed down to Mayo 2 separate times this month. The first time I will go by myself with Mitchell and we’ll have a swallow study along with some follow up appointments from his surgery in October. We’ll come home and then we’ll go down again later in the month as a family and Mitchell will have his next scope. This will be to see what his airway has done since his surgery in October.

I wont post again until the end of March when all of Mitchell’s tests are done. Please keep him in your prayers this month for safe travels, safe procedures and if you have extra praying time we’d love some extra prayers for good news. Your prayers are always appreciated! (thank you)

Take care and enjoy spring…it’s coming!
Paul, Katie, Mitchell and Samuel

Thursday, January 7, 2010 7:33 AM CST

Happy 2010 everyone! This may get to be a long one as I’ll probably do some reflecting as well as updating you on our exciting last few weeks.

So we’ve gone through another year. I really love this time of year because it reminds me to reflect back on where we’ve been. It seems that as the years continue they also get quieter and quieter. I’m certainly not complaining! This year has picked up a bit with the new doctoring down at Mayo. I kind of feel like we are in that beginning year again with learning more about Mitchell’s medical status. We hope that 2010 brings good news to him medically. I know that we have felt so fortunate so far-Mitchell has done so well and has become such a joy in so many lives. Sometimes I try and sit back and watch all of those around us. I just try and take in what Mitchell really means to those around us. It is really fun to see. I love going to the clinic and seeing the nurses light up when they see him; I love seeing Dr.Welle interact with him; and I just love seeing people in general smile bigger when they are around Mitchell. Life gets hectic around here-like everyone else’s, but it is important to step back, take a breath and reflect on where we’ve come and where we are. I was flooded with memories the other day when Dr.Welle told me there was another trisomy 13 survivor in the community. He obviously couldn’t tell me much because of privacy laws, but just hearing that another family here in our community is going through what we did 5 years ago brings back a flutter of memories. That first year is tough…maybe the toughest. But, it has made us stronger as a family and has really made us appreciate both of our sons more than the average parent. I ask that you pray for this family during these uncertain times as well as all of the trisomy 13 families.

Now onto Christmas!! Christmas this year was a little different for many reasons…some planned, some not planned. We started celebrating the weekend before. My brother came home from Washington and also brought his girlfriend Bea.(which was our first time meeting her) My parents along with my grandpa, Beckett and Bea all trucked across Minnesota to come up and celebrate Christmas as well as Mitchell’s Birthday. We had a lot of fun! Mitchell of course couldn’t stop telling them that his favorite weatherman Hutch Johnson came to the house for his Birthday!! We had a great family Christmas…maybe even one of the best. The boys loved opening gifts and Mitchell was starting to like this birthday and Christmas all around the same time. He was beginning to think he needed to open gifts everyday!

They went home on that Monday and the plan was to relax for the week and then Paul’s family would come up for Christmas on Christmas Day. As many know we ended up getting a pretty good snowstorm (17 inches) so unfortunately Paul’s family couldn’t make it until Sunday. Because of this, we missed out on seeing his sister and Jeff, which we were very sad about. We did get to celebrate Christmas with Paul’s parents though…it was just a little later than planned. The boys had fun showing Nana and Papa all the things they had gotten for Christmas and we even got to Skype Antie KT and Uncle Jeff so we did get to “see” them a little bit.

During our storm we just hunkered down and enjoyed our fireplace. The boys ran around and played with their new toys. I think that it was one of the most relaxing Christmases we’ve had. I made an impromptu meal-ham and scalloped potatoes that turned out pretty good. We really just had a great time; just the 4 of us.

Christmas came and went and we started looking forward to New Years. We had a few couples over with their kids and we all really had a great time! We had 7 kids here; 6 of which were boys! (Oh and they were all under the age of 5) CRAZY but lots of fun! I’ll have to post a picture of them. The kids ran around and played while the adults watched, talked, played Wii and ate. It was a great time.

Medically, Mitchell has been holding his own. Of course winter is always a tough time for him as he seems to always get whatever is going around but he seems to shake it off pretty quick. Many have asked if I’ve seen a difference in his breathing after his surgery. At first I was very nervous as his breathing actually sounded worse and I was contemplating making a special trip down just to check him out early. I held tight and now his breathing seems to be pretty good. I’m not sure what the deal was at first, but guessing a lot of it had to do with recovering and his lung. His breathing seems decent. I wouldn’t say I see a huge difference, but I don’t think he is any worse either. It will be interesting to see what the doctors say when we go for our follow-up in a couple months. I don’t know that Paul and I are expecting any huge change…I’d really be happy with just a little change (for the better of course). I know that I would be disappointed if they saw no change at all. But, they’ll see what they see and it is out of our hands, so it is something that we don’t “worry” about or lose sleep over. Only time will tell.

Mitchell really is loving school. Recently he has started riding a trike at school. He absolutely loves it! Sam and I went in to see him and we had to run away from him because he was going so fast. (and then he ran into the wall) Since then I hear that he is learning how to steer more and isn’t needing his feet strapped in. His PT even said that when he really gets going and gets control, he starts to hum. I think that the trike gives him a sense of freedom that he has never had. We just recently purchased the same trike and we’re excited to let him go this spring! (and this winter in the basement)

As for 2010. My goal for Mitchell is to get him more involved. It is hard getting him into things because if he gets sick then he misses so much and then just the pure exhaustion Paul and I feel…by the time we find something that we could put him in to …we are just too tired to put the energy into going. But, this summer I’d like to get him into a soccer league that they have for kids with special needs. I also want to get him into some music classes. Everything stopped once this H1N1 stuff came around and now we just need to gear up and get him involved. So that is my resolution for Mitchell; though I realize it is more on us to get him out there.

One cute story before we’re done. The other night Paul and I were making supper. Samuel came in and we looked at him-he had taken Mitchell’s HME (the filter on his trach) and stuck it under his chin and he was holding it there with his chin. He waved and we laughed of course. Paul said, “Sam, do you think you need a trach too.” Sam says, “ya” (note-he says “ya” to everything) Meanwhile Mitchell is running in behind him shaking his head “no”. Pretty sure it was a “No Sam, don’t take my HME” but you never know. It was funny and very cute. Samuel sure looks up to his big brother.

Hope 2010 finds you happy and healthy!!
Paul, Katie, Mitchell and Samuel

I'll add new photos soon! I don't remember if I showed photos of when Mitchell was down at Mayo-I'll have to put some of those in as well. Also note that Paul and I have a new email address-mine is below if you want his email me and I'll pass it along.

Wednesday, December 16, 2009 2:06 PM CST

Mitchell John Cragg turns 5 years old today!! On this day we especially count our blessings as we remember how uncertain we were the night he was born. When we discovered that our new baby had trisomy 13 we were faced with the reality that he may not hit his 1st birthday let alone his 5th. We certainly have had our ups and downs...but we are so pleased to say that Mitchell is 5 years old and doing WELL! This little guy has taught our family so much and we are so lucky that HE is OUR son.

The last few weeks I have been thinking and thinking about how I can make this day special for Mitchell. Last year it was the Menards cake and seeing him grin ear to ear makes me thrive for that excitement again this year. So what could we do this year?? Mitchell just LOVES our local weatherman. He points to the TV when he sees him and makes sure we also know that he is on. This was my focus this year. I contacted the station to see if they would be willing to get a signed photo of the weatherman so I could wrap it up for his birthday. Hutch Johnson (the weatherman) contacted me and said that it was no problem at all. After a few emails back and forth the station and Hutch came up with something even better...Hutch decided that if we'd like, HE would deliver the picture to Mitchell himself! I was so shocked and so grateful that he would take the time to do this for Mitchell. He stopped by the house yesterday morning. Mitchell was SO excited, he was jumping up and down and running around like crazy. Hutch was fabulous with him. He spent about 10/15 minutes just talking to Mitchell and giving him his complete attention. I was so impressed and so grateful. Mitchell beamed the entire time. Hutch gave him the photo and Mitchell of course LOVED it!!! Hutch left but not without a big hug from Mitchell. Mitchell continued to look at the picture for about an hour after he left! He beamed all day and it really just made my week. Today Mitchell took his picture to school so he could show it to his friends. (still beaming today) I'm anxious to hear how it went! Little moments like this makes it all worth while; every sleepless night, every early morning, every hospital stay, and every doctor appointment...just to see him beam like that. Thanks Hutch Johnson and KVLY for making 1 little boy's 5th birthday memorable!

We have a very busy couple weeks and I'll update after Christmas with a new journal entry and photos! I promise I'll make a new slideshow!

Happy 5th Birthday Mitchell!! We all love you very very much!

Merry Christmas everyone!
Paul, Katie, Mitchell and Samuel

Friday, December 4, 2009 1:26 PM CST

We hope everyone had a great Thanksgiving. This is always such a great time of year. I know it always gets so busy, but it is so important to take time to think about what you are really thankful for. We have so much to be thankful for.

We traveled to Wisconsin for Thanksgiving this year. The boys had a nice time playing with Grandma and Grandpa. They also had a nice time playing with cousins. Of course we ate turkey, stuffing and all that goes with a Thanksgiving meal. On Saturday we went to Paul's cousin's Jake's and stayed. We had a great time just staying up and chatting. Mitchell and Sam had fun playing with their son Cade. A great time had by all.

Mitchell had his first week back at school since we had pulled him because of the H1N1 virus going around. He had a great first week back. I was a little concerned that he would act like the new kid but he went back and melded in just like he had been going the last couple months. He was so excited to get back to school...and I'd be lying if I said I wasn't happy to send him. (it's nice to have a couple hours alone with Sam)

Mitchell has been using his new talker quite a bit. His talker is basically a little computer that is light enough so he can carry it around. The other night I was putting Samuel to bed and Mitchell followed me into Sam's room. He had his talker with him and he went right up to the crib and said, "Good Night". Then he got out of that page and went into a different page and said, "I love you". It really was probably the sweetest thing I've ever seen and heard. (of course I immediately started crying) This was so un-prompted and so genuine. It really reminded me of the moment we had in the NICU with Mitchell shortly after he was born. Paul and I were ready to leave for the night-we were saying our goodbyes and gathering our belongings around his crib. Mitchell opened his eyes for the first time and followed me around his cradle. The moment really is something I can't describe...the look Mitchell had in his eyes that night was the same feeling that he radiated next to his little brother's crib...Love. Like Paul described that night in his Caringbridge entry (Dec.28, 2004)...of all the things Mitchell struggles with, love certainly isn't one of them. I felt so fortunate to be apart of both of these moments.

Mitchell is so thoughtful. We went to see Santa today and I brought his talker. I wasn't sure what he'd "say" but he said, "hi" to Santa and then he introduced his brother. It really is so nice to see that of all the things he could tell Santa...he felt it was important that Santa knew that his brother was also there and his name is, "Sam". What a thoughtful kid. Mitchell loved seeing Santa and sitting on his lap..then of course we had to go eat. (Mitchell's favorite thing to do)

We're just gearing up for the holidays. Before we know it Mitchell will be 5 years old. I can't even get into that...I'll have to save that for another post. I'm guessing that there will be more than just 1 post this month...so many exciting things going on! We hope all of you had a GREAT Thanksgiving! I have finally added some new photos and will really try and get a new slide show up...seeing the 4th of July one makes me miss summer.

Take care,
Paul, Katie, Mitchell and Samuel

Saturday, November 21, 2009 7:28 AM CST

I figured it is probably time for an update. Mitchell has been doing fairly well since our last entry. Right now we are battling an illness that really has been pretty hard on him. I took him in on Thursday because he was vomiting so much and had a fever of 104. It seemed that Tylenol didn't do much but did bring the fever down to about 102. I didn't want to give him Motrin because of his stomach being so upset. My biggest concern was getting him in to make sure this wasn't the start of H1N1. Dr. Welle felt that because there were absolutely no signs of a cold, that this was a stomach flu vs. H1N1. He did however give me a prescription for Tamiflu just in case Mitchell developed any signs of a cold that night. (he didn't so I didn't fill it) He said that we could just give it to him just in case, but that Tamiflu is some pretty strong stuff and if this was just the stomach flu, it would make his stomach more sensitive. For this reason I decided to sit on the prescription. All day Thursday and Friday Mitchell has been pretty sick. He slept most of the day yesterday and by last night I was beginning to get concerned about dehydration. I told Paul that if he is this lethargic tomorrow we'll need to bring him in for fluids. He seemed to drink a good amount of fluids through the night and seems to be a little perkier today so I think he is turning the corner. He is still extremely nauseous but hasn't vomited yet this morning. (nor did he through the night) This is a very nasty bug and I'm just hoping that nobody else gets it. Some of my trach friends say that their kids tested positive for H1N1 and had no cold symptoms, just high fever and nausea...so it is hard to tell what this is. MeritCare wont test unless he would be in the hospital so I guess we'll never know. I still feel that this is a stomach bug being he was able to kick the fever so fast. But, I guess it doesn't matter what it is, as long as he gets feeling better soon. I sure miss the crazy Mitchell we are use to. I know that he is a lot of work; but the house has been so quiet the last few days.
Oh, we did have a chest x-ray when we were in seeing Dr.Welle and Mitchell's lungs are back to normal..that was very nice to hear.

Halloween...we took the boys out trick-or-treating. They really had a great time. Mitchell went as Thomas the Train and Samuel went as Elmo. We all had a lot of fun.

We'll be sending Mitchell back to school after Thanksgiving. I'm sure he'll be extremely happy to get back into his old routine.

We hope that you are enjoying the mild late fall...I know we are!

Take care,
Paul, Katie, Mitchell and Samuel

Thursday, October 22, 2009 7:10 AM CDT

Hi, we don't have a lot to update on...but a few things.

Mitchell got home the Friday after surgery-so he was in the hospital just 4 nights. He really did great with this surgery. Since home he has continued to do well. Mitchell has been running around acting pretty normal.

We had his post-op check last Friday with Dr.Welle. He agreed that he looked pretty good. We did a followup chest xray and that showed that he still has some clouding in that right lung. It also showed that the lower right lobe is collapsed. This was a surprise as Mayo did not mention that he had this. We are currently trying to figure out if this is new since we've been home or if it is from surgery. We are guessing that it is from him having the chest tube. The lung doesn't seem to bother him and he is still able to run around and breathe fairly normal. He was having more alarms at night but now is getting better with that too. We did put Mitchell back on his CPAP at night so it could help inflate that lung and it seems to help him have better nights.

We have all managed to stay healthy. (knock on wood) The H1N1 is pretty prevalent around here. Because of that, Dr.Welle highly recommended that Mitchell stay home from school until he gets the vaccination. This really is a huge bummer. As much as I'm against pulling kids from school...I feel that he is right, especially with the lung the way it is. It appears that he will be out for at least a month as the hospital and public health don't expect to have the vaccine until at least the first week in November if not mid to late November. I have been pretty torn about this decision as I know how much Mitchell loves school and he has been doing so well at school. But, it just isn't worth it. Though most kids do ok with this flu, Mitchell isn't "most" kids. So, I guess we'll just keep him at home for awhile. He will be having some home visits from school and we'll try to do our part here at home so that school isn't totally forgotten.

So, we've basically been homebound now and it really is not fun. I try to think back when Mitchell was totally homebound when he was under a year old. Wow, I don't know how I did it. It looks like we are suppose to have nicer weather so hopefully we'll at least be able to get outside and run around. We just aren't taking a chance and only really taking Mitchell out in the community if needed. Extreme, maybe...but I think that it is what we need to do right now to keep him safe and healthy. We'll be seeing Dr.Welle again in a little over a week. Mitchell will have another chest xray and I'm hoping that the vac. will be in. (though not expecting it to be) I cringe-we pull Mitchell from everything and the only place we go is the clinic...where all these sick kids are. We can just hope that he doesn't catch anything while we are there.

Some brighter news. We are still working on Mitchell's talking device. He hasn't been able to use it much as we're trying to get it programed. He is super excited about it and I can't wait to get it all ready for him so he can use it day to day.

Mitchell has been very big into jumping. He is so proud of himself (as are we). Now Samuel likes to try and jump too. He loves to do anything his big brother does and it is so awesome to see. I just love how Sam looks at up to Mitchell. He watches him constantly and tries to do what he does. Paul and I really have enjoyed watching them bond.

We are going to do Halloween festivities...not sure what yet, but we'll probably take the boys out to our old neighborhood. I'll have to post some pictures.

Take care and stay healthy,
Paul, Katie, Mitchell and Samuel

Wednesday, October 7, 2009 11:11 AM CDT

Mitchell had his aortapexy on Monday! He did great! The surgeon made a small incision on his upper right side of his chest. They went through the ribs with about a 1 inch incision and sutured his aorta up to his sternum. The surgeon said he tried to get it as high as he could.

Surgery seemed to be a success. We have heard from a couple of the ENTs that were in the OR with Mitchell. They did a scope before the procedure and after so they could see if there was a difference. The one ENT told Paul and I that there was significant change! He said that when the surgeon pulled the aorta up, the trachea took the form it should be in-a circle. Before the surgery, Mitchell's trachea was flat-so the trachea walls were "kissing". (basically 100% collapsed) The trachea after surgery did still collapse-but, in between collapsing it would regain that circle that it should be in. This is all great news for us. Now we need to just wait and see if Mitchell's body can strengthen that cartilage to make the trachea stay open all the time. His body also needs to build up scar tissue so that the aorta remains attached to his sternum.

There are still a lot of unanswered questions but we are just one step further.

Mitchell came out of surgery 10 times better than we had anticipated. By the time we saw him in the ICU, he was already off his vent and awake. He was on some good pain meds so he was very sleepy, but knew who we were and looked comfortable. Recovery has been fairly fast for him. (From what the nurses tell me) He moved out of ICU on Tuesday and WALKED all the way from the ICU to his room. He refused to get in the wheel chair or let dad carry him. He was tuckered out after the walk. We try to get him to walk a little more everyday. Yesterday he walked around 3 times. This morning he got out and about and actually walked all around the floor. He used the little walker and did great. We thought he'd take a nap after that but he just seems to be energized by they walk. I'm guessing he'll take a long nap after lunch.

The doctors feel that he may go home tomorrow depending on how his lungs sound and how comfortable we feel with bringing him home. Today he seems much stronger and happier than yesterday. Even the doctors and nurses have commented on just all around how much he looks better.

The next big step will be getting his chest tube out. This is a tube that just sits in his chest cavity and it drains out any liquid that is in there from surgery. He has actually done really well with having this tube-I don't know that he even realizes it's there. Now taking it out is another thing. That will be pretty painful but should be very quick. They'll wait until this afternoon and then I have requested having a respiratory therapist handy just in case he decides to hold his breath. We'll also give him some stronger pain meds before taking it out.

The main thing now is keeping Mitchell mobile and getting his lungs clear. He really seems to be pain free so that is good.

Before surgery we had a few tests run and had some interesting results. He had an echocardiogram and an electrocardiogram. They both showed that Mitchell has a single papulatory muscle instead of a double. This is in the mitral valve. His valve is working well and there is trivial regergitation which means that there is very little blood sneaking out when it shouldn't. This is why we haven't caught this-because he doesn't have a murmur. He had an echo done when he was a baby and this did show the same thing, but I guess it is common for babies to have it and then as they develop, so does that muscle. Mitchell's just never did. Right now it seems to be just something we need to watch with an echo every year and followup with a cardiologist. Again, we were a little shocked with these results, but they have assured us that the valve works as it should. When I asked the surgeon if we should repair it when he's in the OR he said absolutely not-if it isn't broke, they don't fix it...so, the valve works and we'll be happy with that. (just another little quirk with his body)

I think that is about all I know. We thank you for all of your prayers, God certainly heard them and we certainly felt them. I'll probably update when I get home with Mitchell. Paul and I drove separate because of his work and Mitchell's appointments last week. So he'll be home before us and my mom will drive up with me and the boys. Nana has been getting her exercise this week watching Samuel during the days while Paul is at the hospital with Mitchell and me. Again we thank all of our family and friends for being so supportive.

Thanks for the prayers,
Paul, Katie, Mitchell and Samuel

Thursday, September 24, 2009 7:45 AM CDT

It's hard to believe that it is already almost October...where has the summer gone? Things are going well here. Mitchell has been extremely healthy and we're just praying that he can continue to stay healthy through this cold and flu season.

School is going well for him. He is adjusting to all of the kids in his class. This year there are 18 kids in his class which is a huge adjustment from having 4 last year. From what I hear he seems to be doing well. He has a new speech teacher this year and she seems to be very focused on verbal communication. This has always been put on the back burner by everyone. (including us) Not because we don't want Mitchell to talk but mainly because we need him to communicate no matter how that is-so we were working more on his strengths. SO, it is nice now that he is able to communicate through other ways, that we now concentrate on verbal. We have also purchased a new speaking device for Mitchell and we are super excited to get it in our hands. Unfortunately, a purchase like this isn't easy...we have to wait for everyone to agree that he needs it so it is a very lengthy process. Surprisingly we got the Insurance company to agree right away and now we are waiting on his back up insurance Minnesota MA to agree to pay the rest. In the meantime we'll be renting the machine we're buying-and yet we still have to wait a few weeks to get that through. I'm excited for him to get this device, though hope that verbal communication doesn't get thrown to the back burner again.

Mitchell had a very exciting 1st. Last week I decided that my goal for him would be to blow out his birthday candle this year. This is extremely hard for a child w/a trach to do. So I thought we'd give it a try. HE DID IT! We were both so excited-I think I had tears in my eyes and Mitchell was SO proud of himself he kept signing "more". So, we did it a few more times and then we had to call Grandpa and Grandma on "Skype" so they could see him blow out the candle. (Skype is a computer program that you can call up someone else and you can see them on the computer and they can see you-Mitchell LOVES it)

Surgery-and the main reason for the update. I wont post exact dates but Mitchell will be going in for his aortapexy VERY soon. We'll be going down for some blood tests and then he'll go in the next day for surgery. We could use some prayers in the next few weeks. We pray that Mitchell does well throughout surgery as well as throughout the recovery. Mitchell could be in the hospital anywhere from 3 days to a week depending on how he does. SO-prayers are certainly welcome! I will update when I can though probably wont be able to until we are home.

Thanks for the prayers!!
Paul, Katie, Mitchell and Samuel

Sunday, August 30, 2009 1:12 PM CDT

Finally the big update! I actually wrote one a couple of weeks ago and I’m glad I didn’t post it as we have all new information.

As you know we’ve been doctoring at Mayo to try and figure out if we are stuck with this trach or if there is something surgically they can do to remove it. A few weeks ago we had a scope done and the ENT was certain that Mitchell would have the trach for life. However, after further tests, this may not be the case. So, I’ll explain in detail what we’ve been through the last couple weeks.

First-summer…we’ve really had a nice summer even though we’ve traveled to Rochester many many times. We have learned to try and make the best of it and have tried visiting different friends/family when down there. Mitchell has started school. He went a few days and then we were down at Mayo so he has already missed a couple days. He will start full blown preschool on the 9th. Where does the time go?! We are working on getting a speaking device for him and are hoping to hear from insurance soon on if they will pay for it or not. We are all very excited to get him a device of his own so that he can tell us what he wants.

Now for the technical talk. Since last post Mitchell has had a CT scan of his chest, we’ve done a sleep study; we’ve talked to a neurologist, pulmonologist and a cardiac surgeon as well as more visits with the ENT. We are gathering information to get a big picture of Mitchell’s airway and his strengths and weaknesses. The frustrating part is that much of this Paul and I already know…but we have to be patient as they begin to learn about Mitchell and what his little body does. (and doesn’t do) That said-this is a long process and so this last trip I had mixed feelings. Part of me wanted it to be our “last” trip and yet that would mean that we were done exploring the possibility of getting the trach out…so looking at it that way, I didn’t want it to be our last. These trips have been stressful on everyone in the family but we have to believe that in the end they will have been worth it.

Sleep Study. Long story short-Paul and I knew that Mitchell would do fine, but they needed the clinical evidence that he is safe while sleeping. I still feel that they are shocked by the results. Mitchell did awesome-granted; this is with a bigger and longer trach so there is no telling how he would’ve done w/his smaller trach. But, with this trach he scored completely normal for his sleep study. The neurologist did say that during REM sleep he seems to have a little less coordination in his breathing, but he is able to keep his saturations up. So-he passed with flying colors.

CT scan and pulmonologist. We got great news from the pulmonologist (lung dr). Mitchell’s lungs are completely normal and they show absolutely NO sign of chronic aspiration. (Meaning: he has no scaring) We figured this because he has never had lung problems, but-you just never know, so it was very nice to hear. We actually contribute Mitchell doing so well because he has such strong healthy lungs. The pulmonologist also felt that the CT scan showed signs of an artery pressing up against Mitchell’s trachea. We have visited this thought before up in Fargo, but they concluded that they didn’t think this was the case. However, he had had a bronch done in Fargo where his trachea was pulsating (a few years ago). This is what prompted the 2nd opinion as after this bronch we decided to again “wait and see” and nothing happened-this pulsating has haunted me ever since wondering if we weren’t missing something. The pulmonologist thought that it would be worth our time to visit with a cardiac surgeon to see what he thought of the CT scan.

That brings us to this last trip down. The cardiac surgeon also agrees that Mitchell has an artery sitting on his trachea causing the lower trachea to collapse. There is a procedure called an aortapexy that may help with this. This is where they take that vessel and they pull it up and suture it to his sternum. With time it will produce scar tissue and will stay there. Doing this will give the trachea more room to grow and it will take the enormous pressure off of it so that it has a chance to stiffen. Bluntly, without this surgery it will be next to impossible for his trachea to strengthen because of the pressure of that artery which will leave Mitchell trached for life. The surgeon said that this procedure isn’t as invasive as it sounds. He would cut about a 1-inch incision into Mitchell’s chest and work from there. He said that 99 percent of his patients do great with the surgery. He would need to be in the hospital 3-7 days depending on how he recovers. With this surgery there is a high chance that his trachea will strengthen and Mitchell could start working towards getting his trach out. However, even with the surgery it isn’t a guarantee that his trachea will stiffen. However, the cardiac surgeon did say that he would not suggest this surgery unless he felt that it would benefit Mitchell in the long run. He also said that he is very cautiously optimistic about his case.

This isn’t an easy or fast process and a lot of the steps rely on the step before to be successful. Here is a brief outline of “the plan”. I will not put a time line in-know that this could take as short as a year or as long as a few years.

Step 1…aortapexy-this will be done as soon as possible to give Mitchell the best possible chance. I was told that there is a window of opportunity in which the trachea can harden. He is young enough that they feel he still has a chance, but are afraid that if we wait too long, we will have missed that window. We are also concerned about doing this during flu and cold season-therefore as soon as possible would be the best for Mitchell.

Step 2…we will be going down for another bronch/scope. This will be to review his lower airway again to see how it is coming. (this would be a few months after the aortapexy) If it seems to be resolving they may choose to downsize his trach. We will also revisit the aspirating by doing a few swallow studies. We will also need to recheck his reflux to make sure that is under control. This visit would probably be a few days to a week depending on how we choose to schedule the appointments-we could also make it into a few visits if we would like.

Step 3…this last step is if the previous 2 do what they are “suppose” to do. So IF the aortapexy works, IF his airway stiffens up and IF his swallow study is normal and reflux
Is under control. Then the ENT will start talking about reconstructing Mitchell’s middle trachea. This is the area that is floppy because he has the trach-so basically trach induced malacia. I wont even go into detail of what that entails…we’ll save that for if we were to get to that point. If all 3 steps are successful, they will look at pulling out the trach.

I think that it is important not to get too excited. That said-believe me when I say I know it is hard not to. There is a long road ahead of us and we will take each step as it comes. It actually reminds me of when Mitchell was in the NICU and we just had to go day-by-day and sometimes hour-by-hour. This is what we need to do right now. We have found that the roller coaster once again has begun…after all; it was only 2 weeks ago when we heard that they felt the trach was for life. Isn’t it crazy how 1 test could turn it all around?

One thing I know for sure, once this is all said and done we will be at peace with the outcome. If Mitchell comes out of this process trach free, we would be so thrilled. But, if he comes out of this with the news that his trach will be for life, we will know that we gave him every chance we could. All we can do right now is take 1 step at a time and pray as we go along. We will let you know when we schedule the first surgery.

Thanks for the support,
Paul, Katie, Mitchell and Samuel

Saturday, July 25, 2009 8:08 AM CDT

Hunker down...this is a long one!! Paul and I took the boys down to the cities for a week of fun as well as some appointments at Mayo. We really had a great time. We stayed most of the time in Hastings with Paul’s parents but spent a few nights just North of Rochester at Paul’s Cousin’s house.

We drove down on Thursday afternoon and our first appointment at Mayo was on Friday. We saw the GI doctor as well as just a quick Pre-op check-up. Both appointments went well. We feel that Mitchell’s reflux is under control and for that reason; the appointment was really just routine. Dr. Thompson (the ENT) wanted to us to meet with the GI doctor just in case there would be any plans for reconstruction of Mitchell’s airway. If that was what she decided to do-then it would be very important to make sure his reflux is completely under control. Both appointments were pretty uneventful.

Over the weekend, we tried to forget about our upcoming Mayo appointments and concentrate on having FUN! We spent Saturday in St.Paul with Autie KT and Uncle Jeff. We took the boys to the Science Museum and then went out for pizza. Mitchell really had a blast at the Science Museum and he was SO well behaved! That night we had a big steak dinner and made Smores by the fire. (Mitchell’s first Smore and of course he LOVED it!) Sunday we took the boys to the little fair Hastings had going on. (Riverside Days or something like that) Mitchell LOVED watching a dog show that was going on-dogs were jumping in a pool and being timed on how fast they could get the decoy. I think we were all a little surprised at how much he enjoyed watching the dogs. We sat through the entire show-which was probably 15/20 minutes. He was jumping up and down and laughing so hard at the dogs when they’d run and jump into the water. It really was so fun to see him having such a great time. Then we all took turns taking Mitchell on rides. Auntie and I took Mitchell on the spinning dinosaur ride. Yikes-that was enough for me, and to think I use to love rides. But, of course Mitchell just loved it. Paul took him on the faris wheel and he also enjoyed that. After a little fair food-we took the boys back to Nana’s-nap time for everyone.

Now for the Mayo part. Monday afternoon we took off for Mayo. Earlier we had ventured down to Erin’s (Paul’s cousins) to see their place. We were SO fortunate that she offered her place for us to stay so we wouldn’t have to drive as far the next few days. Now THIS was relaxing! Their hobby farm is on 10 or so acres-overlooking the rolling hills and valleys. It was just beautiful! That was what Mom and Dad enjoyed, Mitchell…well, he LOVED the room to run as well as the chickens to run after. He really had a blast. (thanks Erin!) So, Monday afternoon we met with the ENT’s NP. We just went over a few cares and also did a speaking valve test. Now Mitchell can wear his speaking valve and I don’t have to worry about if it is fitting right or if he is getting too much back pressure.

Tuesday morning was Mitchell’s procedure. The plan was to get a bronchoscopy, endoscropy and some biopsy’s as well as a ph probe that would stay in place for 24 hours. The day went well. All of the people at Mayo were very nice. We were visited by many of the professionals that would be in the OR with Mitchell, and some of them came in a few times. We went over Mitchell’s OR experiences over and over again so that we could be certain that they were prepared for this little new patient of theirs. The procedure went well, with no complications. They decided not to do the Ph probe-which was actually a bonus for us.

Results. Unfortunately the results were what we expected. The specialist cannot help Mitchell at this point, which means Mitchell will have his trach for probably another couple years at least. This was difficult to hear. Not that we hadn’t heard it before, but I guess coming from a top notch specialist-I guess it made it so much more final. She said that this doesn’t mean that he will never out grow this, it just means that at this point and in the near future-he still needs his trach. However, because this IS caused from his syndrome-there is a higher chance that he will not outgrow this. Again, we have heard all of this before but I guess we were still holding out hope that this dr could do something or would say something different. He also has “new” floppiness that has developed right around where you insert the trach. I actually noticed this myself the last month when changing his trach-it just didn’t seem the same as it had been. This new malacia is sadly just a result of having the trach long-term. There is nothing we could’ve done to prevent this-Mitchell had to have a trach and unfortunately sometimes there is damage due to having a trach for a long period of time. However, THIS is something she can reconstruct. Right now isn’t the time-but if his lower airway stiffens up, she will then proceed to do a tracheal reconstruction to this new area so that he could be trach free. The other thing-due to the severity of his tracheal-bronchial malacia, she put in a bigger trach (bigger in diameter as well as length). She also wants to special order a trach that is even longer. We will need to go back down there in about a few weeks to get the new trach put in and have a sleep study. Mitchell had been having more sleep apnea then earlier, so we are hoping that this longer trach tube will take care of that. We will also revisit the possibility of putting him back on CPAP or putting him on BiPap at night. This will be up to the sleep specialist we meet with. I am hoping that it is the same specialist we saw a couple of years ago. My question to Dr.Thompson was-if he is collapsing so bad, then why aren’t we seeing more dips in saturations at night? Her response was that just because his saturations aren’t low, doesn’t meant that other things are going down-or up. Her main concern is making sure his carbon dioxide levels are where they should be when sleeping-the sleep study will help us make sure his body is doing what it needs to do. Dr.Thompson was extremely concerned about Mitchell’s current airway. I think Paul and I were very taken back by this as Mitchell has been this way for quite sometime. I don’t know that we saw the urgency that she saw-but she is the expert and perhaps we have just been very lucky that Mitchell hasn’t run into any major breathing difficulties due to the floppiness.

Mitchell also had a scope done to make sure his reflux was under control-everything looked good and normal. This means that there is no obvious damage from his reflux. We are still waiting to talk to the GI doctor over the phone but it seems like the results came back pretty typical of a child with reflux-any irritation was kept in the stomach and lower esophagus.

It is hard not to come away from the ENT consultation disappointed. Again, we both expected to hear what we heard but I guess we both had held out hope that there was something she could do to help Mitchell get rid of his trach. That said; we have to concentrate on the positive. After Mitchell woke up from the procedure the anesthesiaologist came in to talk to us and to see how Mitchell was doing. She proceeded to ask if they could get a few pictures of Mitchell. She said that they do not see many children with Trisomy 13 and commented on how active and healthy he is. She said that when she wheeled him into the OR before the procedure-he was having a great time with all of the professionals back there; laughing and smiling at all of them. Once again Mitchell has dazzled the professionals at Mayo. That is what we need to take away from this. We may have not heard what we wanted to hear medically, but we were reminded once again just how lucky we are to have Mitchell as our son. I know that I’ve said this before-but I don’t understand what it is about Mitchell but he somehow has a way of capturing hearts.

So now what? Well, the big kicker in all of this is our insurance has changed so Mayo is out of network. We are in the process of checking out that before our next visit. We need to make sure that we aren’t going to come out of this with a lot of bills. That said-the next round of tests are just around the corner. They want to do a full workup on Mitchell to make sure they see every aspect of his breathing. They want us to see a pulmonologist to rule out any underlying lung disease, a neurologist (which is the sleep study dr) and get the new trach put in. Together they will come up with a “plan” for Mitchell-this plan is how they feel we can keep him as safe as possible. It really is very overwhelming, after all Mitchell is 4 ½ and has done EXTREMELY well. So we go back and forth of-is this necessary. I guess my feeling…..this should’ve been done 4 years ago. We should’ve had this thorough of a check on his breathing years ago…we just really didn’t have the opportunity due to his stability. When Mitchell got his trach-we saw the bronch-said do it, and that was it…a little “playing” with the CPAP in the PICU and bam…we had a plan. Don’t get me wrong-we are not blaming our drs…this is just how many hospitals do it. Mayo goes above and beyond-checking every nook and cranny. Which again takes you to the “are all of these tests necessary.” Again, it is something we are working through. I believe our plan is to get this comprehensive assessment and then take it back to our doctors so they can manage it. We may go back to Mayo once a year to see the ENT-but we just haven’t gotten that far yet.

Friday Mitchell saw the doctor that looks at his ankles and braces. GOOD NEWS! They are going to downsize his ankle braces! We’re excited to see how Mitchell does with smaller braces. We can always go back to the bigger ones if needed-but it feels good to downsize something!

We also had a swallow study done on Friday. I haven’t posted anything about his swallowing because I didn’t want to “worry” anyone until we knew what was going on. This summer Mitchell has coughed up food out of his trach a couple of times. This is not a good thing-it tells us that something is going on with his swallow and could be VERY dangerous. The swallow study went fairly well-some good some bad-certainly not as bad as it could be. He did seem to aspirate (drink or food going down the “wrong tube”) a small amount of liquid. He did not aspirate the slower liquid. SO-what does this mean? Well, right now we are starting to thicken his liquid. This is a powder that we add to his milk and water…basically anything he drinks. We have him drink a pure juice that is actually already pretty thick-so we don’t have to do anything with that. We are hoping that by doing this Mitchell will not aspirate and we are hoping that it will cut down on his infections. This isn’t good news, but it is better than him aspirating the food. I actually am suspecting he has done this for some time, but it does seem to be getting worse for some reason. It is not typical that someone’s swallow changes, so we really just aren’t sure what is going on there either.

Lots of info. Thanks for the prayers. The last few weeks have been such a whirl-wind that Paul and I BOTH forgot our anniversary. OOPS-I guess we have been so into all of this testing and making sure we were at the right place at the right time—we just forgot. Now, you read this and I’m sure it seems like a lot of bad news. We have to keep in mind that really non of this is "new news", we knew a lot of this-again just seems maybe a little more final due to it coming from the "Mayo Clinic". Mitchell is STILL the same little guy…laughing, smiling, and running around. He’s fine, enjoying life-that is all we can ask. Again, we are so so so fortunate he is doing so well. We’ll get this plan and actually we’re hoping that it allows Mitchell to have fewer illnesses this fall. We’ll update again after our next Mayo trip! It has been such a fun and busy summer!!!

I'll try to add a couple of photos either on the backend of his slide show or the photo page...probably later today.

Thanks
Paul, Katie, Mitchell and Samuel

Wednesday, July 22, 2009 9:41 PM CDT

I'll be updating this weekend-we went to Mayo this last week-but we also have some more appointments in Fargo on Friday so wont update until after those.

Monday, July 13, 2009 1:01 PM CDT

Just a quick entry-I can't believe it has been so long since our last one.

Mitchell has been doing great. We have really been enjoying the summer. We have spent time in Nevis with Paul's family, we also spent the 4th up at my Grandpa's, have been to the zoo, the fair and have many more things left to do before summer ends.

Medically Mitchell really has been holding his own the last month or so. He has been cold/infection free for sometime now and it really has been nice! We really had such a tough spring, it is nice to have a quiet summer.

One huge change we have made is....we are now without nursing care at night! This was a HUGE step for our family and it took us quite some time to come to the point of feeling like we can do it on our own. We moved Mitchell upstairs into his new room and he absolutely LOVES it! It is the first time that we've all slept on the same floor. So far things are going well. He is sleeping GREAT. I think he has only woken up before 6:00 twice since we made the switch. The big test will be this fall and winter when he isn't as active and it is flu/cold season. This is the time that he seems to wake up early and obviously is sick more often. Still, we feel confident that we can handle both him and Samuel on our own at night. Mitchell will still have a nurse with him at school. His care level hasn't changed at all, and being the school does not have a nurse on-site...he will have to have one in the classroom with him.

We'll be going to Mayo in July-I never like to say specific dates for security reasons. (you know me, always thinking)
But, we could certainly use some prayers for this trip. I feel like this is the tell all trip-though I feel like I already know what we are going to hear. Of course being in a different hospital-I am extremely nervous about putting Mitchell under sedation. I get a little comfort knowing that it is Mayo-I guess the name speaks for itself. That said, I'm still a bit nervous. We'll be doing a couple of different things with this appointment. First we'll see a GI doctor to make sure Mitchell's reflux is under control. We haven't had any issues with it, but the new ENT wants to double check because if there is something surgical she can do to help his trachea-his reflux has to be under control. We will also have a bronch done-this is the exact same thing we do here yearly, but just a new set of eyes. While under they will also put a Ph probe in. I guess this is where they put a tube up his nose-sort of like an NG tube and he will have to keep it in for about 24 hours. This will let us know how much he is refluxing. There are a few other questions I have-we'll see if those get addressed there or if we'll deal with them here in Fargo.

One major thing we have run into is we have had to switch insurance again. Our new insurance doesn't have Mayo as "in-network". This may change some decisions but as of now we are still going through with the second opinion. After this visit we'll see what our options are. The important thing is that we get a good 2nd opinion and I feel that this is the doctor that will do this. Also with the insurance we will have to drop speech or switch therapists. We have not decided what we are going to do yet. Right now we are in the process of purchasing a speaking device for Mitchell so it is kind of a tough time to stop therapy, but we'll get it worked out. I figure I've gone 2 years without an insurance hassle, I guess we're due.

It really has been such a great summer so far. Paul is home and we've had a lot of fun visiting friends and family. Lately I really have tried to take the time and enjoy the moment. Both Mitchell and Samuel are growing so fast. And, with being so busy scheduling stuff at Mayo and getting our yearly appointments done (and just being a Mom)-it is easy to always look ahead. I thank a friend for reminding me to enjoy the day. Mitchell is so fun and loving. It really has been fun watching him with Sam. And I still can't help but laugh and smile every time he laughs. I will have to post a picture that was taken at Sammy's 1st Birthday party-you will see what I mean. I just LOVE his big smile and even bigger laugh. (even when he gets into trouble)

We will update probably at the end of the month-after our Mayo trip so we can let you know what we learned. Again, Mitchell could use some prayers to get him through these tests. As he is getting older it really is getting harder to do these procedures. Thanks

Take care,
Paul, Katie, Mitchell and Samuel

Wednesday, May 13, 2009 2:29 PM CDT

We took Mitchell down to Mayo this week for our 2nd opinion on his airway and trach. We had a great appointment and yet you will probably read this and conclude that we really know nothing more than when we went down there.

I guess I could start off by saying this is the doctor we’ve been waiting for. I feel that IF Mitchell is capable of getting his trach out- she is the doctor that will get it done. I also feel that IF she feels the trach will be for life, we’ll be at peace with that coming from her, as we’ll know that we’ve done everything we can.

So what did we hear? We didn’t get a “yes his trach will come out” nor did we get a “he’ll have his trach for life”. Dr.Thompson didn’t want to say anything until she looks at all aspects of his airway. She did a scope right in the office. Mitchell did well with it. She went through his trach and then went through his nose. This allowed her to look at his upper airway as well as his lower airway. There are a few more pieces of the puzzle she wants to see before giving her advice.

The upper airway: this looked good. She agreed that the laryngalmalacia has indeed resolved. She also saw that Mitchell’s tonsils are huge and will have to be taken out at some point. This we did know, but really being he is a neck breather wasn’t too much of an issue. However, now that I’ve seen them and started thinking about it; I’m wondering if this may be the root of some of our infections he has. We’ll talk with Dr.Welle as well as Dr.Thompson about this. She also saw that he has a narrow nasal passage, which is due to his cleft. (We knew that as well)

The lower airway: This is what is below the trach. In my unprofessional opinion-it is a mess. It is collapsed below the trach and then again in the left bronchial. She felt that until she sees the area where the trach is covering, she cannot judge if this is tracheal and bronchial malacia. She thought that the collapsing in the bronchial looked suspicious. Therefore she will also have a CT scan done to make sure that Mitchell’s anatomy is where it needs to be-basically make sure nothing is pressing up against that bronchial. We have been around this before with his doctors here, but we also can’t shake the feeling there is more to this than just the malacia-which is why we are at Mayo. She also saw a good amount of granulation tissue. We knew that he had some granulation tissue and it isn’t uncommon for trached children to have this. However, she felt that the reason for the granulation tissue was because his trach is rubbing against his trachea. This was a little upsetting being this has never been mentioned to us before. She also felt that the reason the trach was rubbing was because we put a 2x2 under his trach to prevent chapping and rubbing of the trach on his skin. She said that even though it doesn’t seem like it would move the trach all that much-just having that small 2x2 under there changes the angle of the trach enough to cause internal damage. This for me was the most disappointing news being it is something we could’ve prevented had we known.

We talked about so many things I just cannot even remember them all. It really was very overwhelming and exciting. She spent over an hour with us and some of that time was used to go over medical records I had sent. She is an aggressive doctor and yet very cautious as well. She is also extremely thorough. She will not take that trach out until she is certain everything has been looked at and are working as they should.

She wants Mitchell to see a gastroenterologist to take another look at Mitchell’s reflux. We need to make sure that that isn’t causing further damage to his airway.

We are doing a lot of repeat testing, but I feel that it is well worth it, especially since the first test (in office bronch) already showed us something we did not already know. She did offer to do this next procedure on Thursday but I felt that Mitchell had been through enough and just coming off of an illness felt that he needed to be given a bit of a break. She respected my decision.

We may not get this trach out and though we’d be a bit disappointed, we will be at peace with that decision. After seeing what his lower airway looks like-I am shocked that he does as well as he does. I also just can’t believe that it has not changed one bit sense the last bronch we got to view-a few years ago. (going off of memory) The images were still very shocking and seemed to me just as bad which again leads me to believe we are dealing with much more than the malacia. I can’t imagine being able to “fix” this to the point where he could go without a trach, but I guess that is why I’m not the ENT. I have no doubt that if there IS a way to correct this, she will be able to do it or will direct us to someone who can.

That is what we learned..and much much more. I felt the trip was well worth the drive. We will be setting up these other tests in June and they will try to lump as many things together as we can. They can be long days and now throwing anesthesia in there scares me but we’ll get through it. She seems to be a very safe doctor and listens very well. Oh one funny thing-we talked about anesthesia and I asked her what she uses-general or light sedation. She said that she uses both but that it was up to the anesthesiologist. Though she did say, “Why is there something you don’t like or that he doesn’t do well with?” I just mentioned that he couldn’t have Chloral Hydrate as we do not like that drug nor trust it. She laughed and said, “Yeah, we don’t use that here”. That made me feel a bit more at ease with bringing him in for procedures. I have to remember that this is THE Mayo Clinic, and I’m sure they don’t just hire anyone-but that doesn’t mean I’m not going to question things…I guess that’s just a mother’s job.

Annette-If you are reading this-I think we saw you on the street at around lunchtime on Monday. I stared at this lady (you I think) and should have called out your name to see if it was you—but we passed and I didn’t. SO-if you were working Monday and were out for lunch, we did see you and I kick myself for not saying anything. If you weren’t…well, guess I’m glad I didn’t say anything. We didn’t get into placement after procedures or hospitalizations, but maybe we’ll see you. I sure hope so; you wouldn’t believe how big Mitchell has gotten since you saw him last.

I will let you know what our next step is and when. We will be meeting with Dr.Welle about all of this soon. I am excited to see what he says about the trip and know that he and Dr.Thompson will work side by side to get the best care for Mitchell. We found a lot down at Mayo, not only a great doctor but also one that values teamwork-whatever the outcome; I am excited for Mitchell. I’d love to share some other fun parts of our trip, but this has gotten too long. I’ll post some more later.

Take care,
Paul, Katie, Mitchell and Samuel

Tuesday, May 12, 2009 6:20 PM CDT

I will be adding a new entry the minute I get a chance.

We went to Mayo for our appointment on Monday-so will update soon!

Friday, May 1, 2009 7:41 AM CDT

Boy I guess it has been awhile. Mitchell came around and the flu lasted about a week for him. He since is back at school and getting into that routine again. Just last night he started showing signs of a cold. I guess there have been a lot of teachers out with a bad cold and actually Sam has one too...so now I guess it's Mitchell's turn. We have Mitchell's Mayo appointment coming up so I'm really hoping this moves through fast.

I'm getting excited for his Mayo appointment, so I really really hope that this cold doesn't cause us to have to cancel. I think it'll be refreshing to get a second opinion, even if it turns out to be the same as our doctors. After our appointment we'll come back and meet with Dr.Welle and discuss what we learned and we'll set up a plan from there. I have heard great things about this doctor, so again, we're really looking forward to it.

Mitchell and I went to the Assistive Technology Expo last night. We really had a great time. It was fun to see all of the devices and let Mitchell look at them. Many of the vendors were very impressed with Mitchell's interest in the devices. He is so ready to get one of these-it just kills me that it takes so long to find the right one. But, I'd hate to spend that money and then have him not use it. Mitchell ran into one of his classmates and he was so excited (as was she)...it was really fun.

I was able to go to school with Mitchell last week because his nurse had a funeral. It was a lot of fun. I was worried that Samuel and I would be a huge distraction and really it wasn't bad. A cute story-during group time the teacher asks if they are happy, sad or mad. She got to Mitchell and on his talker he said that he was "happy"...he then paused for a few seconds and then pushed, "I'm excited" and he smiled and looked back at us. He then pushed, "I like this". It was really neat-to him to recognize-no I'm not happy...I'm more than happy, I'm excited. It was just so fun to actually hear how he felt. He was very excited and happy to have us at school with him. It was very neat.

Nothing else exciting. The boys are doing well. We're anxiously awaiting summer. We bought the boys a swing set and since it has been up, it has rained a lot so we haven't been able to play all that much though we have had a few nice days to play. Mitchell loves it!

I'll probably update after our Mayo appointment to let you know how it went.

Take care,
Paul, Katie, Mitchell and Samuel

Tuesday, April 7, 2009 9:07 PM CDT

Well, I guess April is starting where March left off. However, I am still determined to have a good April.

It seems we had just gotten back to normal, or as normal as we can until summer is here and then Mitchell ended up with the stomach flu. He is doing ok-but vomiting a good amount and pretty lazy. Today he laid around all day and watched movies. So far Sam is doing ok as is everyone else. We're watching him closely as his fever is jumping all over, from 100.5-102.5. We're hoping that we'll be able to keep it under control with tylenol. I am a bit jumpy this illness with fever because of the last time Mitchell was sick. So far he just is vomiting and really hasn't had the diarrhea. I'm hoping that if he has to get both-we just have to deal with one at a time. One thing we also have to be so careful about is dehydration. This is mainly because he is such a hard IV start. So far he is drinking fairly well.

I'm hoping to get Mitchell back to school as soon as he feels better. He has been out for so long now. It looks like he may have a few make up days next week.

Well, I can't write without writing about the flood fight. We thank everyone who has kept us and our community in your thoughts and prayers. We are so thankful we stayed dry during the flood though there were a lot of families who were not so lucky. Please continue to pray for our community. We are expecting the river to continue to go down this week, but because we got added snow, we are expecting another crest. Originally they had thought that the river would get to or exceed the 40.8 crest we saw the first time around. Today we got good news that they actually have changed that and now they are expecting a 38-40 foot crest. This puts us at ease a little bit. However, this is assuming we wont get any measurable precipitation in the next week or two. SO-I guess we're saying this isn't over. Today we feel good, but we've learned that this can change in hours. Right now we're sticking with our window wells sandbagged. Again, please pray for us and for the community. Though this has been so hard on so many people, it is so neat to see the community come together. You can almost feel all of the community praying.

I'll probably update closer to the end of the weekend so you'll know how Mitchell is doing. Please pray that this is a quick bug that doesn't take too much out of him. He is already so tired. The stomach flu is always so hard on him.

Take care,
Paul, Katie, Mitchell and Samuel

Wednesday, April 1, 2009 10:17 PM CDT

Well, after a long long March...it is FINALLY April! April is going to be a better month for us.

Though things around town are far from "normal"...I feel that things around our household are getting back to our normal. Mitchell the other day brought me his shoes and backpack because he was ready to get back to school. Unfortunately I don't think he'll have school again on Monday being Moorhead is 2 hours late. Poor kid-he just wants to get back into his routine. (so does mom)

Mitchell really seems to be getting back to normal after his RSV. Our next step will be starting his speaking valve again. He is so happy to be back home-he has been laughing non-stop and having fun building forts with Dad in the basement.

The river around here is down a lot. We are starting to see parts of the field behind us. They say that round 2 could be as early as mid to late next week. We are expecting the river to rise again but hopefully not as high.

Thanks again for all of the prayers,
Paul,Katie, Mitchell and Samuel

Monday, March 30, 2009 2:07 PM CDT

We're HOME!! Just as we left....short notice...we came home...short notice. I made the decision quickly this morning as we are expecting a blizzard. The river is going down quickly, which is great! We are all still very very cautious and I think that all of us are expecting a "round 2". We are thinking that will come when things warm up so hopefully the river will go down more before that round 2 begins. Right now the river is at 39.05

There are a couple of amazing pictures that USA Today took of our house. If you go to this website and go through the photos, we are #5 and #6. (the 2 story that is blue w/white trim) That is water all around the house. It is hard to see because of the water freezing.

http://www.usatoday.com/weather/gallery/2009/flash.htm?gid=922&aid=4389

We were fortunate to be able to get to Nevis, where the cabin is. It was nice being close, especially since it was so hard to leave. I have always made fun of those people who don't leave and have to be rescued by the coast guard. Well, after going through this-I can honestly say, if it weren't for the boys I would've stayed here with Paul. So-I guess this was an eye opener for me.

Both boys were just so excited to be home. Mitchell has been up since 5AM this morning and refused to nap because he was so excited. Both boys have been all smiles since they've been home. They both missed Dad so much! (as did I)

Thanks for all of the thoughts and prayers. I do think we still need them though as this snow will have to melt and they are saying that the wind the next few days might cause issues for some of the dikes. We don't rely on a dike, but many in town do.

Thanks
Paul, Katie, Mitchell and Samuel

Saturday, March 28, 2009 6:51 PM CDT

Another quick update.

Paul and I decided that we needed to get the boys out of town after they changed the crest to 42 feet with the posibility of getting to 43 feet. Trudy (Paul's mom) and I took the boys up to Nevis where their family cabin is. Paul and his dad stayed at the house and are still there.

The house is fine. We are fairly safe until 43 feet and they finally dropped sand for our development so Paul, his dad and our neighbor worked together to get some sandbags around our window wells as well as our neighbor's.

All in all, things are going well. Of course we are concerned about our basement, but much more concerned about friends in the area. Paul feels so bad that he is "stuck" in the house and can't be out helping people and I also feel bad, but I guess that's how it goes.

Please continue to pray for our community and friends. We appreciate all of the prayers so far.

Thank you,
Paul, Katie, Mitchell and Samuel

Thursday, March 26, 2009 10:30 AM CDT

Just wanted to update you on how things are going. We are still safe and dry. Water is coming up fast though we still aren't expecting to have problems. That said, it is still nerve racking. Nobody wins in this situation, even if you are dry. We have friends fighting the flood and it is just sad to see anyone lose their home. Please continue to keep the Moorhead/Fargo community in your thoughts and prayers. Paul is out helping friends. I'm hanging with the boys and Nana and Papa watching the house. I had originally thought I'd get out and help, but we are concerned about both of us being out there. The river will get high enough to take the roads (probably tonight)-so we feel safer with 1 on this side and 1 on the other side. Emergency bags are packed and we're as ready as we can be if for some reason we'd have to be evacuated.

On the flip side. We have enjoyed the wildlife. The deer are just crazy around here trying to find the high land...we may wake up with deer hanging out in our yard. We also have a ton of eagles and a couple bald eagles.

Anyway, continue to keep us in your thoughts and prayers.
Paul, Katie, Mitchell and Samuel

Here is my facebook site again with photos. If I stop updating, it is probably because we've lost power...don't panic-we'll be fine.

http://www.facebook.com/album.php?aid=96230&id=672902845&l=b18e9d28d5

Monday, March 23, 2009 7:18 AM CDT

***Here is some photos I'm taking of this week. I hope you guys can see this-those on Facebook can see them, but I think if you just copy and paste this site, you should be able to see them even if you aren't on Facebook. I'm planning on photo documenting this entire event.***

http://www.facebook.com/album.php?aid=96230&id=672902845&l=b18e9d28d5

Just a quick message-we're requesting some prayers.

Mitchell is fine, doing well after his RSV. He will be going to school today.

Our prayer request is just for basically our entire community. This flood is hitting hard and fast. Last night before bed we got a rain storm and the last I had heard we got 1.5 inches. This isn't a good thing...and that was before it had ended. We are expected to get more rain and even snow this week-all don't help. Paul was out sandbagging behind our old house yesterday and then lastnight helping our friend's with their rental property. It has gotten personal this time, where in 97 we were both college students who really didn't know anyone who owned a home. It has been a different experience on the other end of it. The city sent surveyers out again to double check our house. They say that we are fine up to 43 feet. The highest they say the crest "should" be is 41. We are getting a little too close for our comfort but we have many friends that are much closer. We are trying to prepare for the worse-getting food and everything in case we would be stuck here and have no power. Paul is working this week-but we'll see about the end of the week. Papa and Nana are going to come and help with the boys so that Paul and I can concentrate on the house if need be and so we can help others. I guess I'm not sure what you can pray for as it is a sure thing that the community will flood-I guess you could pray for it cresting lower than predicted.

Thanks-we'll let you know how things go. It is suppose to crest on Friday.

Thanks
Paul, Katie, Mitchell and Samuel

Friday, March 20, 2009 12:23 AM CDT

Well, this update finds us doing much much better. Mitchell is pretty close to being his old self. I'll be expecting him to go to school on Monday.

Paul and Samuel ended up with the stomach flu last week. It was a pretty nasty bug. I know Paul hasn't been that sick for a long long time. Sam wasn't as bad, but his seems to be lingering on a little longer.

I have done everything I can in hopes that Mitchell wont catch the stomach bug. I'm hoping that both he and I have dodged it.

Really nothing more exciting on the health front. Mitchell is doing great and it is so nice to see. Last week was a situation that could've gotten pretty ugly fast. I was so happy that Paul identified Mitchell's distress as early as he did. I think had he even waited an hour, we could've ended up in a totally different situation. He was a pretty sick little guy and he got worse fast. Again, it has reminded both Paul and I how lucky we have been with Mitchell's health. This really has been the first time we've had to do the ER scene...it went pretty well. I'm thankful that they noticed Mitchell needed immediate care vs. sitting in the waiting room. I have heard horror stories about ERs and I just can't say enough good things with how we were treated. They listened to everything we had to say and I think it made a big difference.

Lots of people are asking about the flooding. Well, it kind of creeped up on everyone. We knew flooding was a big possibility this year but we were expecting the river to crest in 2-3 weeks. They all of a sudden moved that up to this weekend. We think our house should be fine. They are expecting a 39.5-40 foot crest and we should be fine up to about 41/42 feet. That said-it is still a pretty serious situation. We'll be watching throughout the weekend and listening to the projected crest to make sure we don't have to sandbag. We are planning on having a "to go" bag ready for the boys in case it would get high enough to water lock us in. We would then take the boys to stay somewhere. It is always a bit stressful going through your first flood in your new house. I know that our old house is lower than this one, so I try to keep in mind if we're sandbagging here, we would've been sandbagging sooner there. SO-wish us luck-we'll of course keep you posted.

Take care,
Paul, Katie, Mitchell and Samuel

Tuesday, March 17, 2009 2:44 PM CDT

Mitchell seems to be much better today. What a difference a day makes!

I canceled nursing care last night. (call me crazy) After he had such a bad night I needed to see for myself where he was at with this illness. He actually had a great night. He only alarmed once and that was when his HME came off so he wasn't getting the added oxygen. He woke up briefly maybe once or twice, but really not too bad at all. His heart rate even stayed below 100. This morning he woke up full of energy and saying "all done". Evidently he thinks he is done being sick. Within minutes he was pouring Kix onto the kitchen floor and getting into trouble.

He had gotten that steroid pill yesterday and I guess all I can say is....SIGN ME UP FOR ONE OF THOSE!! He did slow down after an hour or two, but really has had a great day. He has been off of oxygen all day except for nap. Lets hope this means we are on the mend and can put this behind us.

Just as I was typing this Paul called me upstairs to help with Sam. I went up there and poop EVERYWHERE! PLEASE pray that we aren't coming down with the stomach flu too!!! I'm hoping that this is maybe from a tooth coming in or trying a new food. But, then again-leave it to our two boys to pack flu and cold season into a 2 week period vs. a 4 month period like it is suppose to be. For the 30 minutes it took me to clean up Sam's mess...I was thankful for my sinus infection. It is great not to be able to smell!

With that....HAVE A HAPPY ST.PATRICKS DAY! I'll update if anything exciting happens-if we are status quo I'll update at the end of the week after we see Dr.Welle.

Take care and enjoy the beautiful weather!
Paul, Katie, Mitchell and Sam

Monday, March 16, 2009 3:39 PM CDT

We went to see Dr.Welle today and he was surprised to see how sick Mitchell still is. He really is still very pale and not wanting to do anything. You can get him to crack a smile if you mention watching Mickey Mouse or if he hears us tell Sam "No"...typical big brother.

He had a temp of 102.5 today which is the highest it has gotten here at home. He gave him a little steroid pill and I'm hoping that helps speed things up.

I haven't seen Mitchell this sick since he was a baby. All he does is lay on the couch or his bed. Once in awhile he'll get up and try to play-but not for very long. Right now we are trying to push fluids to try and flush this thing out. However, with his strong cough-he gags a lot and vomits. Right now my goal is to just keep him hydrated. If he stops wanting to drink, we'll be looking at going back into the hospital so they can do IV fluids. I'm hoping we can avoid that. We'll see Dr.Welle again on Thursday or Friday and he said that he wanted to see him remarkably better....we sure hope for that too.

Please keep Mitchell in your prayers-this RSV is no joke. The entire family has had the virus and it is not fun. Unfortunately, Mitchell got the worse of it.

Take care,
Paul, Katie, Mitch and Sam

Saturday, March 14, 2009 7:48 AM CDT

We made it home!! Dr.Welle let us go yesterday afternoon. Final tests came back that this was/is RSV. Our first test came back negative but after it continued they re-tested everything.

When we got home yesterday it was like Mitchell needed to do all of his favorite things. SO-he packed up all of his buddies and they played the Wii, they watched a movie and they went and played downstairs with Dad. I felt bad because I knew it would catch up to him, but he just wouldn't slow down. He finally did and laid on the couch with his friends and then laid with Dad for a bit. And went to bed a bit early. Paul and I were racing to see who could get their designated kid to sleep faster...I think we tied. They were both pretty tired. I myself quickly followed. I slept in Mitchell's room and ahhh, it was heaven. There is something about going to bed before 9:30 knowing that you wont get woke up every hour and knowing that you wont wake up with a sore back from the chair they call a bed.

Mitchell had a great night. He has now gone 24 hours without a fever! I'm hoping he keeps it up and yet this morning he is looking kind of punk so I'll give him some tylenol just to be safe. He was on .5 L of oxygen lastnight and kept his sats up well. This morning was a little tougher but he was ready for a treatment so his sats dropped and I had to put him on a full liter. (which really isn't a lot, but is for him) After his treatment he decided to go back to sleep...in my bed on the floor! I can't turn the light off or he'll wake up...for those who know him--he usually wakes up at 5:00, so now that it is almost 8, you know he is feeling bad. And I ask-what they heck am I doing up? I guess I got some good sleep last night-I'm hungry and ready for a big breakfast! I bumped him back down to .5 l and he seems to be doing fine there so he must have just needed to get cleared out a bit.

One thing I forgot. Mitchell has gotten use to hospital life. I had to put the light on but before I figured that out-he was crying sitting up in his bed...I told him he was ok and as I was getting up to comfort him he chucked his buddy "Al" at me....and hard. Not really sure what that was about, but he really just wasn't happy. I turned the light on outside his room and then he was fine. (Al and myself are fine too) When he wants to, he sure can throw.

We'll see how the days goes. We go back to see Dr.Welle on Monday for a re-check. I feel bad for these guys (Sam is the one who had this to begin with) This is no joke. I got it (in adults RSV is a cold) and it really is a tough one. I can't imagine having a high fever with it too-poor guy. Paul is starting to cough a little bit but says he feels fine. Sam is feeling pretty good-just coughs once in awhile. His worse was a couple weeks ago.

I'll probably update on Monday. Assume the weekend went well unless I post again. I'll also try and put a few new pictures of Mitchell on.

Take care and thanks for the prayers...and yes Lora...GO SPUDS! (the hockey team is at state and are in the champion ship game tonight!!)

Paul, Katie, Mitchell and Samuel

Friday, March 13, 2009 10:33 AM CDT

Just a real quick update. Mitchell had a pretty good night last night. No fever until this morning-but because he had 2 good temps in the night the nurse didn't wake him for his Motrin-so fever of 100.6. (not bad) He has been a little punk this morning. They took some more blood to check platelet count and all that good stuff. Dr Welle saw him this morning and thought he was looking better. He is hoping to let us out today-probably this afternoon, but said don't pack the car yet. We have to wait and see how the day goes and see how his blood work comes back. He'll be going home on a little O2 and a fever but right now it doesn't appear that they are doing anything we can't do at home. I think we'll all be just more comfortable here.

Thanks for the prayers.
Paul, Katie, Mitchell and Samuel

Wednesday, March 11, 2009 8:44 PM CDT

Well, looks like we may be in here for the long haul. I really just have no idea how long we'll be here.

Mitchell has stumped everyone. They don't know if this following the bronch is a coincidence or if it has something to do with each other. I thought for sure we'd be able to go home and then he spikes a fever. I think that Dr.Welle was hoping to discharge him today or tomorrow but after nap today he spiked again to 105. He had such a great morning-trying to get out of bed and wanting to play. After nap he hit a wall and was just a mope all afternoon and evening. He sat with Paul most of the afternoon and evening and really enjoyed it. He really is tired of being with me as he has turned into such a Daddy's boy.

The infectious disease doctor saw Mitchell today. She was very nice and I think I'll really like her. Unfortunately she didn't have much to add. Her and Dr.Welle will have a "pow-wow" (as he says) tomorrow and try to decide what to do with him. He has a cold, is needing a little oxygen when sleeping and when not sleeping he is satting lower. But really, that is all that is going on besides these crazy temps. They took a blood culture today to see if there is an infection in the blood.

Paul and Sam finally got dug out around 2:30 this afternoon. I think he is planning on taking tomorrow off as I don't think we can bank on a snow day.I myself will probably try to spend some time at home resting. I just started getting this cold the boys have had which has been kind of a bummer. I'm trying to get as much sleep as possible here, but some nights are better than others. Mitchell is also refusing to take meds from anyone but me so I'm waking him up at night so we can get him motrin and tylenol.

Paul has figured out how easy Sam is at night...I think I'm in trouble. He was tickled pink when he called today to tell me that Sam slept from 9AM-8:30A. He now says he knows how much of a vacation I've had the last 8 months. I tried to tell him that we could switch off and on with Mitchell, but he didn't believe me that Sam wasn't that hard to take care of. (I guess now he knows)

Going through this has made me so thankful for Mitchell's health. We have been so fortunate. I know that there are so many trached kids and kids w/trisomy 13 who are in and out of the hospital. I try to think of that when I get frustrated with being here...we really are so lucky. That said-every time I talk to Dr.Welle I ask him when we can bust out of this joint. With that-I know that he wont let us go until he and I feel comfortable. He is such a caring doctor. Last night he went over the plan for Mitchell and then looked at me and asked how I was doing with all of this and if there was anything he could get me. We are use to rolling with the punches, so we're fine...though I did ask if he could roll in a plush queen size bed. He laughed and said unfortunately he can't and thought I was getting the bad end of the deal with this chair bed. We sure did pick the right pediatrician.

Please continue to keep us in your prayers. I just hope this moves quickly if it is a virus and if it isn't, just pray they figure it out soon.

Thanks,
Paul, Katie, Mitchell and Sam

Tuesday, March 10, 2009 10:07 PM CDT

Well, unfortunately I wrote a long update and lost it so sorry-you'll have to settle for a short version.

Mitchell is doing ok. We're still in the hospital. We ran a few tests over-chest xray, influenza and sputum. Again-everything is negative, which is great. His sputum does show a few bugs, but they are typical for him and generally don't cause too much of a problem.

Last night Mitchell spiked a temp again 105. We were able to get it down but he continues to be really up and down with is temps. Dr.Welle said before we go home he has to be consistently below 101. He was also on a little oxygen.

Today he got up to 103 and hung around 101-103 pretty much all day. He got down to 100 and is hanging out there tonight. He is needing a little oxygen tonight as well. The O2 is mainly because Dr.Welle doesn't want him to struggle at all so he wants his saturations above 95. (usually he is 97/98 and usually we don't put O2 on him until 90)

Things are going well. Our family was split today as Paul and Sam are riding the blizzard out at home and are snowed in and Mitchell and I are stuck at the hospital. Paul had a snow day today and we're hoping for one tomorrow-but if not he'll take the day off again. We're hoping that he is able to get dug out and join us for a bit here in the hospital. Mitchell saw him for a bit this morning, but really misses him. He keeps asking for dad.

We could continue to use your prayers. I myself am doing fine but can feel a cold come on. I know that it is because I'm not sleeping well, but what can you do. I just take my aerborne and hope that it is short lived.

Thanks for the thoughts,
Paul, Katie, Mitchell and Sam

Monday, March 9, 2009 10:46 AM CDT

Just a very quick update...

Mitchell was admitted on Saturday night. We brought him to the ER because he was running a high temp 102, but mainly because he was acting very weird-disoriented and shaky. They brought him right back so we didn't have to wait in the ER.
I'll get into more details later-because I have to get back to the hospital.

By the time we were at the ER his temp was 106...very scary.
We got an IV in him and they admitted him to the PICU-though they ensured "he isn't critical". Though I'm not sure why 106 isn't "critical"...sure is to me.

Anyway--he is doing fine. His temp last night still got to 103 on antibiotics and tylenol and motrin. But during the night it broke and got to 98. This morning it is back up to 100 and we're trying to stay on top of it.

Dr. Welle is in and out seeing him. (Thank God we have him) He isn't sure what is going on--all tests are negative (RSV, influenza, pneumonia) so that is good-now we are waiting for his sputum culture. They don't know if they are dealing with a viral infection or bacterial. I think they'll keep him in another night until they get more of a handle on what is going on here.

Mitchell in the mean time is signing that he is "all done". He is getting harder to keep in the bed, so that is a good sign. He also has captured hearts once again-signing "thank you" to the flight nurse who finally got the IV in him.

We are in a good place-they take good care of him. I'm staying with him most of the time (we always have one of us there) Paul had to go back to work today because he took Friday off for the bronch. We're hoping for a snow day tomorrow. Sammy is along for the ride. He has been great through all of this. He himself has a cold/cough and cut his first tooth last week so he really is wanting Mom which is making this even harder. Though Paul said he was able to console him a bit lastnight. We'd love to drop him off at friends, but being he isn't healthy I just hate to do that and right now is doing well just hanging out with us.

Please say some prayers that this moves quickly through his system and we're able to get him home soon.

A side note--his oxygen saturations are 98-100, so respiratory wise he is doing great!
Thanks-
Paul,Katie,Mitch and Sam

Friday, March 6, 2009 4:59 PM CST

We’re back home—Mitchell did really well.

As he gets older it is getting harder to go through this. I think Paul and I realized this as the lady took him back to the OR-he looked back and gave us a sad, scared look. This is typically a look we don’t see from Mitchell. He was soon distracted though by his buddy “George” (Curious George that is). They said he was a doll back in the OR-he really did well. Now the recovery room-that was a different story. He did well, but was a little crabby coming out of it. He thrashed around quite a bit. Once we got him relaxed and sleeping-he did much better. Guess he just had to sleep it off.

They cleaned up Mitchell’s ears a bit and decided that they looked clear enough so he didn’t need tubes. Now for the bronch: He didn’t have any granulation tissue, which is good. Dr.Nagle also looked down past the trach to see his lower airway. He saw that there was still a lot of collapsing. This really wasn’t good news. We didn’t expect it to be totally resolved, but were hoping for some change. I guess what makes it hard is we really don’t know anything more than we knew before. (except that he is still collapsing) We don’t know if there really even was a change because it was a different doctor and they didn’t tape it. (nor did they tape last years) (this is a bit frustrating) So I guess all we know is that there is still significant malacia…but compared to what it was before…who knows.

Mitchell and Sam did very well today. It gets to be a long day. (for everyone) Today was the best we’ve had though. Being they did it in the OR…we were fairly close to being on schedule. Typically it is in the PICU and we’re always at least 1 hour late and usually it is more like 2 hours late. Today the procedure was scheduled for 8:45 and they came to get us at 9:00. It took about 45 minutes and as far as we know there were no issues. (though they put the IV in his foot…which leads me to think they weren’t impressed with his IV possibilities) We were able to come home around 3:30ish. Now both boys are just resting.

We saw a few of the nurses Mitchell is use to. It is funny-we aren’t there that often anymore and yet it still feels like home. We are all so comfortable there and they always treat us so well. One of the nurses commented while we were leaving (as Mitchell was waving to everyone he passed), “he’s like a little celebrity here.” He really is. It is fun to see everyone’s face light up when they see him and how big he has gotten. I know it is there job, but they really are great people.

Now what? I guess we just sit and wait. Something we figured we’d hear, but never easy and always disappointing. We’ll still go to our Mayo appointment and see what she says. Unfortunately, I’m sure she wont be able to say much until she actually sees his airway. It will be interesting to see what she wants to do. I don’t know if she’ll want to do one, or if she’ll just send us on our way-or if she’ll just wait to do one until next year. I guess we just have to wait and see. (again, that isn’t until May)

All in all, it went well. I hate sending Mitchell to the OR for anything-even if it is a 30 minute procedure. Anytime he is under for any amount of time-doesn’t matter if it is general anesthesia or light sedation…it makes me nervous. I guess you’d think I’d be old hat at this, but I don’t think I’ll ever get over the fear of something going wrong. That said-we are all hugging Mitchell a little harder today and Dad is going out to get Mitchell’s favorite…Pizza. Boy, he is such a cool kid. He did so well, we are just very proud of him.

Not sure when I’ll talk to Dr.Welle about all of this. (probably at Sam’s 9 mo.appointment) I’ll update when we have something exciting.

Take care,
Paul, Katie, Mitchell and Sam

Wednesday, March 4, 2009 7:42 PM CST

Thought I’d post a quick message. Please keep Mitchell in your thoughts and prayers Friday. He has his scope scheduled. This will be done a little different than usual. A different doctor is doing it and he will be in the OR instead of the PICU. He will also be under general vs. light sedation. So, a little more to this scope. They will be looking at his airway-looking for any granulation tissue and then looking to see how it looks. The ENT said that he might down size him when he is in there as well. He’ll also look at Mitchell’s ears and decide if he wants to re-insert tubes or if he wants to just see how he does without them. (His 2nd set has fallen out now) The entire procedure will probably take about 45 minutes and then we’ll just have to wait and see how he comes out of sedation. Mitchell is always different with this-sometimes it takes him all day and sometimes it takes just minutes. How he does recovering will determine if he comes home that night or the next day. I really would be shocked if he stayed in the hospital…but you just don’t know.

It really is a bad time of year to be in the hospital and had I been thinking-I probably should’ve waited until April to do this…but we’ll just hope and pray we don’t get any icky germs when we’re there. (I’ll probably come home with very chapped hands from washing so much)

Friday will be a long day. I’ll try to update during the weekend on how the scope went and what we found out. I’m not expecting earth-shattering results. Our hope is that there is a little improvement with his airway-enough so that we can downsize.

So that is about it. Oh, I forgot to mention-Mitchell did end up with a rash this week. (go figure) I am positive it is from the lotion I put on him after his bath the other night. I guess I’m crossing my fingers that they’ll still do the bronch. I didn’t think it would be a big deal as I thought it would be gone-but now looking at it tonight, I’m sure it’ll still be visible. I’ll probably end up calling Dr.Welle’s office tomorrow to see what he wants to do. I myself see no problems with going through with the bronch as I know the cause and it really isn’t that bad…though you just don’t know, they may not want to take the chance. I’ll be pretty upset with myself if that is the case—and Paul will say, “I told you not to put lotion on him”. Lets just hope that doesn’t happen.

Please keep Mitchell in your prayers that all goes well on Friday. I’ll post as soon as I know something.

Thanks
Paul, Katie, Mitchell, and Samuel

Wednesday, February 11, 2009 10:22 PM CST

****New slideshow....it's a long one!***

Ok-I lied; I just can’t get enough of updating, so I’m doing it early. Actually I thought it might be fun to do just an entry on “Brothers”.

Mitchell just loves this brother thing. It has been so fun to watch him. Samuel loves it just as much. I get tears in my eyes when I see how Sam looks at Mitchell. (good tears) It is really just awesome. Samuel looks for Mitchell, he listens for Mitchell and when he finds him…he tries to get to him. At 7 months old, Sam wants to do what “the boys” are doing. He wants to read the books Mitchell is reading, he wants to play the marble run when Paul and Mitchell are playing and he loves all of Mitchell’s toys. It is really fun to see how much Samuel already looks up to Mitchell. Today he even started coughing when he saw Mitchell cough.

Mitchell loves Sammy just as much. Every morning he runs out to see if I brought Sam down with me. He asks for him often. When he hears Sam wake up in the morning, he usually wants to come with me to say “good morning.” It is fun to see that he really cares for him. One time at lunchtime I was getting Mitchell’s lunch ready and Sam was sitting in the high chair crying and wanting his lunch-all of a sudden he stopped crying. When I turned around; Mitchell was feeding Sam. It was so cute. We fight with the kid everyday to use a spoon and yet he was able to get that little spoon into the baby food jar and without spilling a drop, he gave Sammy a bite or 2 just to calm him down. (I of course had to get the camera and tell Mitchell to do it again so I could take a picture) When I ask if Sam can read books with us, he never says no. Mitchell also never forgets Sam. He wants Sam to go everywhere with us and he is also very good at introducing his baby brother. He is such a proud big brother.

OK-so they aren’t always just cute and getting along. Mitchell LOVES to push Sam down. The amusement is starting to wear off though because now Sam is very stable when sitting…it was REAL fun when he was just learning to sit. Mitchell also loves to walk circles around Sam. Every time he goes around he gets closer, and closer and closer. I think he is trying to see how close he can get before either Sam starts to cry or I tell him to stop. Hum…what else, Oh-he also likes to stick his fingers in Sam’s mouth because he knows Sam will try to bite him (with no teeth). Lastly, and most of all he LOVES to lay and roll on Sam. This is the most irritating and exhausting for us, mainly because it is the most dangerous for Sam.

But, all in all they get along great. Mitchell is always inviting Sam to play with him and Sam never turns down the opportunity. It really is so fun to see this bond start, especially this young. So I guess my point of writing this post is to say-Mitchell is just an awesome Big Brother. Sammy sure is lucky.

I will be working on a new slide show of Mitchell and Sam pictures. Hopefully I’ll get it on soon.

Have a great Valentines Day!
Paul, Katie, Mitchell and Sam

Sunday, February 1, 2009 7:51 AM CST

Well, I’m a little late-but better late than never, right?

Mitchell’s pulmonary appointment went fairly well. He said that Mitchell sounded like he was moving air equally-which is good. However, he also said that he didn’t want to scope him for another 2 years. Both Paul and I said that was just unacceptable. Most children with traches get scoped AT LEAST once a year if not twice-so waiting 2 years is just not something we are willing to do. He met us in the middle (I guess) and said that he is willing to start downsizing Mitchell’s trach and maybe the ENT would scope him. This will satisfy us for now. Though Mitchell’s bronchialmalaciaq has yet to resolve, once it starts it could take very little time, which is, why we feel 2 years is just too long. That said, I talked with Dr.Welle yesterday when I brought Mitchell in. He told me not to worry about Dr.Kantak and that he would be pushing as hard as we are. I explained that yes we want the trach out as soon as possible, but obviously if he isn’t ready, he isn’t ready-though we want to be cautiously aggressive with this instead of just sitting and waiting. We are keeping in mind that we may end up in the cities for a second opinion.

I brought Mitchell in yesterday because I just can’t get him back to “normal”. It is beginning to get very frustrating. He isn’t really sick, but isn’t normal either. He continues to be extremely junkie. Well, he has an ear infection and we are also checking for infection in his sputum. That should be back in by the end of the weekend. I just hope that we get him back to normal soon.

We will see Dr. Nagle (the ENT) in March and that is when we’ll talk about downsizing Mitchell’s trach. This really is just trial and error. You just keep downsizing to see how he does with a smaller trach-meaning he is using his upper airway more to breathe. We’ll watch for signs of not tolerating the smaller trach. We’ll let you know what the ENT says.

Mitchell has been trialing a new device called the Dynovox. It is basically a touch screen computer that says what he wants. We are the ones who programs what it says but he pushes what he wants. This really has been working well. It is still amazing how well he navigates these computers. Yesterday Mitchell found the “fart” button. Paul, Mitchell and I had a very good laugh about this. Now keep in mind I didn’t program the “fart” button. We have our section that is programmed for Mitchell, but he has figured out how to get out of it and get to the other pages that are just the factory settings or pages other people had made. He found the bathroom page and pushed, “I have to go to the bathroom” (of course he really didn’t) then he pushed the “fart” button a couple times and it made a farting sound….it was very very funny.

The downfall to the touch screen is that now that Mitchell has learned how to work touch screens…he feels he can “work” our touch screen remote for the house. This remote controls the thermostat as well as security system. I told Paul I think we may have to put it up where he can’t reach it, as it would be a spendy thing to break. He now thinks everything is “touch screen”. This morning he came up to my laptop and started pushing my screen. (Crazy kid)

We have a few prayer requests as well. We ask that you pray for a family that will be giving birth within the next couple of weeks. The grandma contacted me because she saw we lived near them and couldn’t resist Mitchell’s picture. She said that reading his story gave her a sense of calmness. Her daughter may be giving birth to a baby who may have trisomy 13 or 18. Please keep baby Aiden in your prayers as well as his family.I also ask that you pray for Keren’s family. Keren was a 6 year old little girl who had trisomy 18. We were just notified through the support group that she passed away on the 28th. It was very unexpected as she was doing so well. I guess these things always hit so close to home because though we know that Mitchell is doing so well…you just never know what God has planned. Please keep her family in your prayers. These things always make me hug Mitchell (and Sam) a little harder. They also fuel my patience and remind me that we need to be thankful for each day we have.

That said, we probably wont update for a month or so.

Take care,
Paul, Katie, Mitchell and Samuel

Wednesday, January 14, 2009 10:53 AM CST

Happy New Year!! I promised a new post…so here it goes.

Medically, nothing exciting. Mitchell is doing great-he has infections here and there, but handling life well.

He has become quite the handful behaviorally. It is tough to tell if this is just typical toddler behavior or if we are going to have a troublemaker on our hands. I pray that this is just a phase. One thing we know-he is very strong willed…a trait he gets from both Mom and Dad. I truly believe this is what has kept him alive during that tough first year and yet the same drive and stubbornness is going to get him into trouble. Don’t get me wrong-he is still pretty good, but we have our moments. (I suppose just like any family) And of course being non-verbal certainly doesn’t help.

We continue to try out different devices for communication. We have stopped signing with Mitchell as his fine motor skills make signing just too hard and frustrating for him. He still signs a few signs and we use what we can with him. We are finishing up a trial run with a machine called the “Tango”. It is more or less a computer that says different things he might want to say. It requires a lot of navigation skills and Mitchell has seemed to master this. (better than Mom at times) However, we aren’t certainly that this is the machine for him…it may just be too fun. He just doesn’t seem to be using it as much as we’d like to see for communicating-but instead more for just something to play with. We’ll be trialing a new machine soon. I have seen this one briefly and am excited as it appears to be more his style (at face value at least). This will just be a trial and error process. A common thought is that if we have this device, Mitchell wont learn to talk because he has something else doing it for him. This isn’t true. Verbal communication is the most efficient and if he has what he needs to verbalize-he will do it. Our biggest question right now is “Does he have what it takes to talk”? This is something that we cannot answer right now. He has the voice-even with his trach he has a nice voice. The biggest thing is-if the connection in his brain will allow him to learn to speak. Of course we pray that he will…but right now we just have to find some way that he will be able to communicate-just in case as we can’t just sit around and wait for him to talk. We will still be working on verbal communication-it isn’t just thrown aside, like signing-these voice output devices are just another type of tool to help Mitchell get across what he needs to.

Many have asked why I don’t put more photos of Samuel on the site and if I do they are typically of both boys. I do this purposely because I just feel strongly that this is Mitchell’s site dedicated to him and his struggles and triumphs in life. As any new baby-it is easy for them to “steel the spotlight”…and because of that I am very conscious about what I post of Sammy. I just prefer to keep it mainly about Mitchell with tid bits of Sam every now and then. I certainly would love to share all of the wonderful photos I have of Samuel and gush about him-but this just isn’t the place. He is doing very well and it has been really fun watching Mitchell with him. Now that Sam can sit up-Mitchell seems to be getting more and more excited. I think that he sees that someday he will be able to play with him. I think that we will have a very fun summer playing outside with the boys.

We had a fabulous 1st Christmas in our new house. We had my family up for a couple of days and Paul’s family up for a couple of days. We both were able to celebrate Christmas with our brothers-which they have been out of state (and country) for the last few years. Mitchell truly had a blast playing with is uncles. We also had my grandpa-the boy’s Great-Grandpa here. It was tough-first Christmas without Grandma, but we were so thankful that Grandpa made the trip to celebrate with us. Grandpa was a huge help with Sammy as he loved holding him and everyone else was busy either cooking or playing with Mitchell. (Thanks Grandpa!) They became quite the pair.

Mitchell had a blast this Christmas. He is old enough to “get” Santa and opening gifts. He of course had his favorites-Handy Manny outfit and Menards Pencils were among the top on his list. It really was fun to watch him. He would open a gift and show Sam as if he were taunting him- “LOOK what I got!”. Very fun times!

Well, I think that is about it. Mitchell has an appointment with the pulmonologist this month. I will probably be posting at the end of the month updating on that appointment.
We will be talking seriously about what the next step is and honestly; this next appointment is going to help us decide if we will be getting a second opinion on Mitchell’s airway. SO-wish us luck.

Take care and stay warm!!
Paul, Katie, Mitchell and Samuel

I'll be posting new pictures soon-I got a new camera and photo program for Christmas and I'm having a little trouble getting them to resize for the website...so keep checking I'll get it one of these times.

Monday, January 12, 2009 8:00 AM CST

I'll try to update soon!

Tuesday, December 16, 2008 8:03 AM CST

Hello! I know, it has been just way too long…almost 2 months since our last post. It feels so good though to not have to update all the time. Not because I don’t like to do it, but because it means that there isn’t really anything exciting to post. When I don’t post for a while, it is so hard to remember what all has happened.

First off…Happy Birthday to our little guy…not so little anymore. It is so hard to believe that we’ve made it 4 years. I go back and read our posts each year and our journey has been a long one. We have been so fortunate and God has been so good to us. I try to not take things for granted which is why I try and read our old posts. It reminds me of how quickly life can change and how thankful you need to be for each day-and each and every Birthday. Birthdays really have taken on a whole new meaning for me.

We had a Birthday party for Mitchell this weekend. As you can see he had a Menards cake. YEP….Menards. He is obsessed with the store and the word. He searches through every paper to find a Menards ad, he points out every Menards sign when driving and also yells like crazy when there is a commercial on the TV. So, only fitting that we’d have a Menards cake. He also loves Mickey Mouse—so we had Mickey Mouse decorations.
Mitchell LOVED the cake. He loved it so much that we had to put it in the pantry until his party. My fear was that he’d look at it and look at me like he had no clue what it said-thank goodness that didn’t happen. We had a great time at his Birthday. The blizzard caused Grandpa and Grandma to go home early and Nana and Papa had to stay home. I guess that’s what happens with winter birthdays. Friends from the area came and Mitchell had fun playing with the other kids. We really had a fun time. I think every year I have more fun.

Now-for other updates. Last time I had posted I mentioned that my Grandma Miller had not been doing well. She passed away about a week after I had posted and we made another trip to Amery for the visitation and funeral. Unfortunately, Mitchell started vomiting shortly before we were to leave and then did right before we got into the car to go. Go figure-he would get the stomach flu the 1 time I HAD to leave town. We still ended up traveling and he felt better within a couple days and was able to make it to the funeral. However, all who have kids know if 1 gets it the other will soon follow. Sammy came down with it on Halloween. Sadly, he didn’t get to go trick-or-treating. Paul, Beckett (my brother) and I took Mitchell to a couple places. Trick-or-treating was exactly what we needed after a long couple days. We made it through the trip without Paul or I getting sick and we were happy to hear that nobody else got it as well. The boys got to spend some much needed time with their Uncle Beckett. It was so great having him home, though the circumstances weren’t the greatest. It was still nice to sit around and chat. (Maybe I should say I got some much needed time with my brother) He’ll be back for Christmas and we can’t wait.

There really isn’t anything exciting medically for Mitchell. He has been on antibiotics for some time now because of an infection he just can’t shake. We actually will go in on Wednesday and see Dr.Welle for his 4 year check-up.

Now Sammy on the other hand-he sure threw us for a loop this last week. He had a few spots on his bottom. To make a long story short-1 of them turned into a big boil that was draining. We took him into the walk-in clinic and thankfully we saw a fabulous doctor. He tested Sam for MRSA (a pretty serious staph infection) and he tested positive. He is on heavy antibiotics. We are very fortunate that we brought him in or it could’ve gotten pretty serious. The biggest thing is that because of Mitchell’s trach-this could be pretty dangerous. Thankfully, the infection is in his diaper area-so it is well covered and Mitchell isn’t around it. SO-we hope that this will help us keep Mitchell healthy. I have also bleached many things and wash my hands like crazy. Sammy has a follow-up appointment on Friday. I haven’t talked to Dr.Welle about this MRSA yet, but will on Wednesday at Mitchell’s appointment.

I’m sure there is so much more I could write about. Mitchell is doing well in school. We had his IEP meeting and they are all impressed with how he is doing. Mitchell has made great strides in the last year. We are now “playing” around with a few different voice output devices. The one Mitchell just trialed was pretty cool. He navigated it pretty well, but it was the older version so some features were not available. We’ll be trying another one with the newer updates to see if they help. Mitchell seemed to like it. He was able to have a conversation with us and it was a lot of fun.

We also had Samuel’s Baptism. Mitchell was so funny-he came up with us and his eyes were as big as saucers when he saw the water. Then he looked at me and signed “bath”. Well…yes I guess it is a bath. We were fortunate to have a houseful for the Baptism. I’ll be sure to add pictures.

We continue to get nursing care at night for 4 nights a week. We’d love to pull it all together but are afraid of finding out we can’t do it on our own and then being stuck without care. Insurance companies just don’t get it. And, I have to remember…it is easy for me to say that we can do it…now that we have Samuel, Paul is the one who has Mitchell at night. How I easily forget what those nights are like. Most times he does well, but if you loop a couple bad nights in a row, it’s tough. We’ll see how the winter goes with Mitchell and then Paul and I will have to sit down and talk about when or if we should continue the night nursing. He also continues to have a nurse go to school with him. Anita is a wonderful lady and we are so fortunate to have found her.

We wish everyone a Merry Christmas. I’ll be posting pictures of Mitchell’s Birthday soon. OH-as well as Halloween pictures!! We only have 1 of each boy but they sure are cute!!

Take care and Merry Christmas,
Paul, Katie, Mitchell and Samuel

Tuesday, December 16, 2008 7:58 AM CST

New entry today...I promise!!

Wednesday, October 15, 2008 11:15 PM CDT

So much to update! And yes new pictures…soon!!!!

First, As many of you probably know-my Grandma Miller had a brain aneurysm on Friday morning (the 10th). They were on vacation and in Missori. Grandma is not doing well at all and it is so hard on everyone as they are so far away from home. My mom has set up a Caringbridge site-this has been important because again they are so far away and this way Grandpa can read and see how many people are praying for Grandma and our family. We just ask for prayers for Grandma and our family. This has been such a shock and I know we all just miss them both so much and it is so hard that we cannot just reach over and give Grandpa a hug or squeeze Grandma’s hand. Here is Grandma’s site
http://www.caringbridge.org/visit/elaineemiller

The boys are doing great! Mitchell has been doing great at school. He is in a smaller class this year and it really seems to be benefiting him. He continues to absolutely love school. We have a new speech teacher for Mitchell at home. We are switching to a teacher who deals more with voice output devices. I think that we will really like her. I am excited to introduce these devices to Mitchell.

We received a letter from the geneticist that saw Mitchell when he was born. I try to update him from time-to-time and just recently sent him a letter on Mitchell. It is one of those things…does he really want to know how he is doing or is he just being nice? Well, in his letter he really showed increased interest in Mitchell and how he is doing. He also asked that we start sending medical information and evaluations so he can get more information directly from the doctors. This is exciting to me because I want Mitchell’s “story” out there. Even if it only helps 1 family have hope…that is 1 family that might have a better outlook on their child’s life because of hearing about Mitchell. I remember all of the “unknowns” when Mitchell was days old. What is this syndrome? CAN babies live with this? I remember looking at the Living With Trisomy 13 website and seeing a little girl who was school aged. I remember feeling instant hope and I want others to feel that.

Mitchell had his eyes checked and got new glasses. His prescription is a little stronger. Other than that we really haven’t had any health issues. I did bring Mitchell in to see Dr. Welle so that we could check his ears. He had fallen over at school a couple times and this is typically a sign of getting an ear infection. He was also taking out his hearing aids. Anyway-he was fine but Dr.Welle said, “Mitchell…I’m use to seeing you every other week and now I see you only every few months…what’s going on” It sure is a good feeling. Even though we love Dr.Welle-it is great not to feel like we live at the clinic.

We a spontaneous trip home (to Amery) this past week. My very good friend’s grandma passed away and I really just felt I needed to come home. So, I packed up the boys and went. I knew I couldn’t ask Paul to take work off and football off to go and figured that the weather is great-lets go. The trip as far as driving went great. The boys were such troopers. We took off and only had to stop once-in St.Cloud to feed them both. We stopped at Burger King and Mitchell had his favorite apple fries and Sam of course had his bottle. Again on the way back we only had to stop once and that was at the beginning of the trip-we stopped at Grandpa and Grandma Cordes. I was fortunate to make it to the visitation for my friend’s grandma-and it was so nice to see her and her family. I was of course saddened for the reason we got to see each other-her grandmother was a fabulous lady. All in all it was a sad weekend as then Friday morning we got news about Grandma Miller. We did get Mitchell out to the deer/zoo in St.Croix Falls and he had a great time! And, we also were able to see all of the beautiful fall colors. I forget how beautiful that part of the state is in the fall.

Paul’s brother Joe was home from New Zealand. He and Auntie KT came up to spend some time with the boys. We had a great time with them and Mitchell had a great time playing with both.

I’m trying to think of more things-I’m sure there is more, but it has been so long and this week has been so crazy that I just can’t think. I started this entry on Sunday and am finally finishing it. I’ll try to put up pictures tomorrow (Thursday).

Oh gosh--I almost forgot. Mitchell was in his first parade this month. Moorhead had their homecoming and Mitchell was riding with the science department float! Dad drove-and Mitchell and Mom road in back with a few other kids and science teachers. We really had so much fun! Mitchell threw candy and people and of course being the ham he is-he loved every minute of it. He didn't get throwing candy at first-after all...why would you want to throw candy and give it to someone else?? After about a block he got the hang of it and just LOVE LOVE LOVED it! Oh-can't forget Sammy, he road in the cab with Dad and pretty much slept through it. After Dad went to coach the game and Mitchell, Mom and Sammy went home and had their very own Pizza Party. We really had a fabulous time-I can't wait until next year.

Thanks again for the prayers.
Paul, Katie, Mitchell and Samuel

Sunday, August 24, 2008 8:28 AM CDT

This morning I woke up and took both boys while Paul slept in. (I got to yesterday morning) Anyway, it was a site to be seen as Samuel, Mitchell and I piled on our rocking chair to watch Sesame Street. In an odd way it was very relaxing…just mom and her boys. If you know Mitchell…you can guess it only lasted for about 5 minutes but it was great.

Both boys are doing well. Mitchell started school and has gone now for 2 weeks. He just loves it, which is so nice to see. The first day he smiled, laughed and walked out to the bus with the nurse. The second day he smiled even bigger, laughed even harder and ran out to the bus…and he hasn’t looked back since. We have this next week off and I know he is going to get upset when that bus doesn’t come. He has started signing “school” and he does it right away in the morning. I’m so glad he loves school. We hope that it continues as he gets older. I also enjoy school time. The time goes by so fast but it is a great time to get errands done, something done in the house or just sit and enjoy Samuel by myself.

Paul starts school this week. He “eased” me into staying home with the boys by myself when football started. It has gone pretty well-but next week with no school for Mitchell should prove interesting. I have managed to attempt outings by myself with both boys. It isn’t bad unless Samuel decides to be fussy…then we just have to stop what we’re doing and go home. It is just too hard if Sam isn’t cooperative. He is still a pretty good baby-he has 2 moods…happy or VERY unhappy. There really isn’t a mood in-between that for him. He does really enjoy just lying on the flood and looking around. He does like to be held, but only on his own terms and if he doesn’t want to be, he’ll let you know.

Mitchell continues to work hard at using his PECS. This is the picture system we use with him to communicate. He had a little setback when school started, but he has all new teachers and I’m hoping it wont be long before they get use to how he does things and how he communicates.

We really have had a great summer. It went so fast. We were able to get to the Lindow Golf Tournament last weekend. We had a great time with all of the Lindows. Paul golfed and his team proudly got the prize for the team with the highest score…and they really didn’t do badly at all, I guess the competition is just that tough. I stayed at the cabin with the boys-Nana helped take care of them. I had hoped to golf, but it just wasn’t going to work with still nursing Samuel, as the tourney is pretty much all day. After we went over to cousins Brent and Karin and had a big..no HUGE family picnic. Now looking back I wish we would’ve tried to gather all of the kids to take a picture…there were so many…and most under the age of 6. It really was crazy but a lot of fun!

We are really enjoying our new house. I think at least once a week either Paul or I will look at each other and one of us will say, “I love our new house”. We now have a few trees and a lot of flowers/bushes. We will (hopefully) get our sod put in at the end of the week or the beginning of the next. That has been a bit frustrating, as we had hoped it would be in a week or two ago. I have really enjoyed my desk area up in the loft. I feel like I have my own spot where I can print pictures, work on Mitchell’s Pecs book and scrapbook. (ya, I haven’t started scrapbooking yet) Though Paul threatens to take over my desk area as I think he likes it just as much as I do.

That’s about it for us. Medically Mitchell is doing great. We haven’t had to go see Dr.Welle for a while now. (knock on wood) In the next month he’ll be getting new braces for his ankles and will also have another eye dr appointment. I think that is pretty much it for appointments for him. He continues to do well with his brother as well. He just loves him so much-it is fun to see and yet frustrating at times as I think I spend all day telling him to leave Samuel alone. He really just can’t get enough of him. If Samuel isn’t up when Mitchell is up in the morning, Mitchell asks for him. The nurse has said that on the way home from school he always asks about Samuel. (he has a sign for Samuel)

I’ll try to post some new pictures soon.
Take care,
Paul, Katie, Mitchell and Samuel

Wednesday, July 16, 2008 9:33 PM CDT

We have lots to update on. As you can see from the picture-Mitchell is now officially a Big Brother.

Samuel David Cragg was born on Saturday the 5th at 8:51 PM. The exciting day started with my water breaking at 1:30 PM…right at nap time. I wasn’t in labor yet which was nice because we could take our time getting to the hospital which meant plenty of time to get Mitchell’s care figured out. Our good friends Sally and Eric came to take care of Mitchell until my mom could come. She was at my Grandpa’s so it would only take her about 2 ½-3 hours to get here. It was so nice to have this work the way we had planned and it was nice to be able to go to the hospital knowing Mitchell was in good hands. Labor went well; very slow at first but then picked up and before we knew it we had another son. Samuel David was 8 pounds 9 ounces and was 20 ¾ inches long.

Mitchell came up to the hospital with Dad and Grandma. He loved seeing Samuel and was excited to see Mom again. He was able to get to the hospital a couple times before we came home. He and Dad even visited the NICU for a quick “hello”. Mitchell loved all of the attention he got from the nurses.

I myself had a nice “vacation” while in the hospital. At one point Paul looked at me and asked, “So when can you get up and walk around?” I laughed and said, “Anytime I want, I just don’t want too…I’m on vacation.” It was great. I had everything a gal could want-her hubby sitting next to her, food service when I wanted-just a phone call away and nurses ready to help me if I wanted anything else. Again, it was so nice knowing that Mitchell was taken care of and we could just relax and enjoy our newest addition. (Though by Monday I was ready to get back home)

Since we’ve been home (Monday the 7th) both Mitchell and Samuel have been doing well. Mitchell has really been a trooper with all of the changes these last few weeks. We have noticed tonight that he has been a little more sensitive, but overall dealing with the changes well. Samuel is a VERY laid back baby. He typically only cries if he wants to eat or needs his diaper changed…we hope that this isn’t just a “honeymoon period”. He also sleeps pretty well. Right now he is up about every 3-4 hours to eat but goes right back to sleep when he is finished. We have his 2-week appointment on Friday. I’m interested to see how much he weighs.

Mitchell continues to get home visits-though lately we’ve had to cancel for some reason or another. Things have been pretty busy here with getting the house finished up and Samuel, but we try to keep Mitchell’s schedule the same. I’m sure he will be happy once school starts back up in August.

I’ll update again probably in a few weeks. I’ll try to post a few more pictures in the photo album. Hope you enjoy the pictures.

Take care,
Paul, Katie and Mitchell

Friday, July 11, 2008 6:10 PM CDT

Trying to get an update and pictures...hopefully by the end of the weekend.

Thursday, June 26, 2008 12:04 AM CDT

Well, I thought I’d update before things start to get too crazy around here. We may not have internet access for a few days, so thought we’d try to get a quick update before the big move.

Mitchell continues to do great. He absolutely loves his Dad being home for the summer. Last week we went to the fair and had a GREAT time. Mitchell and Paul went on rides and Mitchell really had a great time. I suppose typically the first fair ride is typically a marry-go-round, not Mitchell. His first ride was a roller coaster. I got a little nervous once the ride started, as I should’ve watched to see how fast it went before putting Mitchell on it. Luckily even though it went a little faster than I had thought, Mitchell absolutely LOVED it. (Paul of course road with him) He said that he signed “more” the entire time. They went on a few other rides. I’ll try and get some pictures up.

We will be moving this weekend. We are looking to get the main things over Friday and Saturday and then the movers will move the “big” things like the couches on Sunday. We are excited to finally get into the new house and will post pictures when we get back online. We should be “connected” early next week. I sent out an email for those of you who I have your email address…if for some reason I missed you, drop us an email and we’ll send the new address your way. I’d love to post it on here-but just don’t feel comfortable doing that.

Take care,
Paul, Katie and Mitchell

Sunday, June 8, 2008 9:48 PM CDT

Just a quick update…as really we have not a lot to update on.

Mitchell is doing great. He is really enjoying time outside-when the weather cooperates. This next week will be Paul’s first week at home for summer break. He does have football camp though, so really the next week will be his first full week at home. Mitchell is already excited about seeing Dad more often…he has become quite the Daddy’s Boy.

Mitchell will have school for 2 weeks in June and then he’ll be off all of July. He will still have some home-visits, but will not be in the classroom until August. We are still trying to figure out how August is going to go as I cannot longer be in the classroom with him and the agency is having a hard time getting a nurse to fill the position. It is really a long story that I just don’t have the energy to tell. I have faith that we will get this worked out before August.

We have been without night nursing now for a good 3 weeks. Our main nurse moved out of town and our part-time nurse we had to let-go. (another long story...just one of those Mommy feelings that also became a Daddy feeling as well) I am actually very surprised at how well it has gone without night care. Mitchell is sleeping better and we are actually feeling like a “normal” family. We have a part-time gal that is great, she actually just started. She did 1 night this week and will do 1 night next, and then she’ll start doing a couple nights a week. Even though this is going very well without nursing care, we know that if Mitchell were to get ill…we would really be in trouble. And-once the baby gets here we also know that we will need help. SO-hopefully the agency can get someone soon. But, since we have not had care, Mitchell has slept better at night and also has been sleeping in more. Keep in mind sleeping in for Mitchell means he sleeps past 6:00.

The house is coming together great. We are getting very excited to move in and are looking forward to doing so in the next few weeks. Hopefully we’ll have the option to take our time moving in-as we don’t have to be out of this house until July 1st. Our plan is to move the essentials over first and then take our time with the other boxes.

I myself am feeling pretty good; just the typical pregnancy complaints-heartburn and feeling like my stomach is going to split from the skin stretching. I am still in shock at how different this pregnancy is from Mitchell’s. At this point I have gained ½ the weight I did with his and I have absolutely NO swelling at all. My dr even commented last week that my blood pressure is “ridiculously low”. I have now started my weekly visits. I told Paul I get anxious before each appointment now as when I was pregnant w/Mitchell it was my 36 week appointment that my dr admitted me immediately saying I wouldn’t leave the hospital without having a baby. I’ll be 36 weeks on Wednesday. Baby is moving like crazy-sometimes he pushes so hard it hurts. (strong bugger)

We’ll probably try to update when we move into the new house. If not-it won’t be until baby comes. Don’t panic if we have no update, as we are so busy right now. We’ll update when we can along with pictures.

Take care,
Paul, Katie and Mitchell

Tuesday, May 6, 2008 9:49 PM CDT

Just a quick update and an urgent prayer request for a friend.

Mitchell is doing fine. We have had a tough month, as we just can’t seem to get Mitchell back to his “normal”. He continues to have an infection in his lungs/trach. He is fine-playing and having a good time. He is just a little more “junkie” than normal. Dr.Welle “threw the book” at him and put him on a number of antibiotics. Well, Sunday he came down with another antibiotic allergic reaction. We are now working on getting the hives cleared up. Hopefully he’ll be hive free by tomorrow. As for another allergic reaction-we just pray that this is the end of them. It gets scary to think that we can’t use a couple different “families” of antibiotics. We also hope that is isn’t a sign that we’ll have more allergies to come.

Mitchell and I enjoyed the beautiful day today. It was so nice to take Mitchell to the park. We have also really enjoyed going over to the new house almost every night. It is so fun to see Mitchell in the new house. He really enjoys going. A cute story-While they were sheet rocking, they had a platform in the garage and Mitchell LOVED running under it. He thought it was so neat. Well, the sheet rockers were done and of course the platform went with them. That next day when we visited the house Mitchell was just absolutely devastated that his new “toy” was missing. Paul and I warned him that it wasn’t going to be there, but he evidently didn’t realize that we weren’t joking. He soon got over it and now he picked a new “toy”…he loves running on the cardboard that is on the garage floor. (Why do we buy toys??)

Now for the prayer request. I know I’ve written about Paul’s sister’s good friend Karie. I just read an update tonight and we are very sad for her and her family. She is in the hospital unconscious right now-her left side seems to be paralyzed and they are looking for a miracle. Please keep this family in your thoughts and prayers. I cannot say enough good things about Karie-and I’ve only met her once. She has fought so hard and it just isn’t fair that she and her family has to go through this. So again, please keep them all in your prayers.

Take care,
Paul, Katie and Mitchell

Friday, April 18, 2008 10:12 PM CDT

Mitchell did great today with his bronch. As he gets older it gets harder and yet also a little easier as he is much more stable than he was even a year ago. When we walked into the PICU everyone was so glad to see Mitchell again. Dr.Storm (the intensivist) looked at Mitchell and said confused, “THIS IS MITCHELL CRAGG?!” He was shocked to see how big he was and to see him walking in like the little boy he has turned into and not the baby they remember him by. It has been about 1 ½ years since we’ve been in the PICU and he has changed so much since then.

The procedure was scheduled for 12:30, but we had to be there around 10 so we could make sure Mitchell was all ready. He was unable to eat after 12 and once again thought this would be an issue, but he showed us that he was a trooper and was only upset a couple times. (Nothing a movie couldn’t handle) Mitchell watched movies and cuddled with Mom and Dad all morning until the procedure. They decided to use Nitrus Oxide to relax him a little bit so it would be easier to get the IV in. Wouldn’t you know it worked like a charm and the nurse who had him was able to get the IV in the 1st try! I think that is the first time that has EVER happened. Now getting Mitchell to lie in bed with an IV in his foot is another thing. He actually did so well, as long as we kept Sesame Street going.

The actual procedure was very short. We were able to stay with Mitchell until they got everything ready. The best part was when they gave Mitchell Versed (sorry bad spelling) to relax him before starting the sedation. Mitchell looked up and started grinning and pretty soon he was in a belly laugh. (Evidently Mitchell likes the way he feels on Versed)
We all couldn’t help but get a good laugh and of course that made him smile and laugh even harder. He was a very HAPPY little boy. Paul and I left and the procedure took place.

Now for the findings. Mitchell did great through the procedure, fell asleep well-woke up well and kept breathing throughout. We found that the upper airway looks great-and his malacia up on top is totally resolved…this is great news. We knew last time that it had improved-but now after 1 ½ years it is completely resolved. The lower airway-which is the lower part of the trachea into the left bronchial has not resolved. In fact, they see very little improvement. This is a little discouraging, but we hope that because the upper airway has resolved, there is still a chance that the lower one will…we’ll just need more time. SO-we will look at his airway again in another 1 1/2-2 years. Realistically, I don’t know that we are surprised however we are still a little bummed. (If that makes any sense) It really isn’t the trach that is so bad…I guess it is just everything else that goes with it. The equipment, the appointments, the illnesses, the nursing care…we were really hoping that within the next year we could cut some of these things out. But, we will wait and let Mitchell decide when it is ready. The last thing we want to do is get that trach out only to see that he is unable to be as active as he would like because of an unstable airway. And-we really need to remember where we came from….just 2 years ago I was praying that I could take him to Target on an errand….just last summer we were able to travel with him. SO, we have to believe that each year we will be able to add new things to our list as he gets stronger and stronger.

It was very nice to see all of our old friends back in the PICU. I remember why I like that place so much and yet why I’m so thankful that we haven’t made it our home for quite sometime. It is nice that they look at Mitchell and see how far he has come and yet, they don’t let looks deceive them…they were prepared for anything he could throw at them. Remember, Mitchell has given many of those nurses and doctors some pretty good scares-in an odd way it is very comforting that they remember what he is capable of and know that they are on their toes. They are also so great at listening to Paul and I. We went through our concerns with sedation and together came up with a plan so that we were all comfortable in what was going to happen. This is important as Mitchell does write his own book and certain drugs really scare us and it is nice to know that they too are scared of certain drugs with him. We are so very fortunate to have them right here in Fargo, they are really great people.

And you thought I was done…we have had a very exciting week. BEFORE all of this-Mitchell was on an antibiotic for an infection he had in his trach. Dr. Welle called and switched the antibiotic to Amoxicillin because the other one wasn’t doing the job. After about 4 days Mitchell woke up with about 6 dots on his body. I thought he had gotten bit by a spider or something and felt bad, but what do ya do. Well, after breakfast-those 6 bumps turned into 12….to make a very long story short within 24 hours Mitchell was 1 big hive. The poor kid was just COVERED in hives. He was such a trooper-never acted like he cared one bit. We have now discovered that Mitchell is allergic to Amoxicillin. This is a big bummer. Mitchell’s hives went away after 48 hours off of the antibiotic. We now have him on another one and are hoping that we don’t run into any more allergies.

That is our story for the week. My goal is to do pictures tomorrow. Thank you for the prayers and support.

Take care,
Paul, Katie and Mitchell

Saturday, April 12, 2008 9:10 PM CDT

Finally an update. Just a warning-I’m sure you’ve figured it out, but updates will be coming just here and there-it is getting hard to keep up with Mitchell, the new house and being pregnant…so don’t panic if there isn’t an update every month-we’re just busy.

Lets see-where to begin. We’ve had Grandmas and Grandpas up to visit. Everyone is always so surprised how much Mitchell has grown since the last time they had seen him. I’ll try to update some pictures of Easter with Nana and Papa and also some time spent with Grandpa and Grandma.

Mitchell has been doing well. He now knows all of his ABCs, though don’t quiz him, because he likes to pretend he doesn’t know them. (he is a teaser that’s for sure) He has been doing fabulous with his PECS. (picture exchange communication) He uses this every day. It is a program where he picks a picture of what he wants and brings it to us. He knows his pictures well and if he doesn’t have that specific picture, he really does a nice job of getting a picture that is close to what he wants. It really has been fun to see him take to this way of communicating. The gratification in his eyes is so rewarding to see. We continue to use signing from time to time, but the PEC will be his main form of communication. He seems to like this better and seems to fit him better. Paul and I are up to using whatever works for him. School is going well for him. He really seems to be bumping up his play skills, which is fun to see. And of course we can’t forget his social skills. Mitchell is quite the social butterfly. After school is done often times you’ll see him going to each of his friends and waving “goodbye” to them. He can’t miss a one; we are typically the last to leave because he just has to catch everyone.

Medically: Mitchell saw the pulmonologist. We have a scope scheduled for this Friday. The scope is to see what Mitchell’s airway is doing. We really aren’t looking at getting rid of the trach this summer but we are hoping that the scope shows a lot of improvement and maybe a good goal would be getting rid of it next spring. This of course is what is in our heads-not the doctors-though they want it out just as much as we do. I’m not really sure what they are thinking…at this point I think they are scared to say, as you never know with Mitchell. We have to be careful because we don’t want the trach out before he is ready because it could cause more damage if we would have to re-trach him. So, his ENT and I both agree that we’d rather be a little conservative about taking the trach out than overly aggressive….it just isn’t worth the stress for us as well as little Mitchell and his airway. I will update the site as soon as we are back at home and settled after his scope. We could certainly use some prayers for Friday. He will be going under a light sedation. This is something that makes me extremely nervous, as we have to depend on his breathing vs. general anesthetic where they put him on the vent. So, please pray for a quick and easy procedure as well as a quick and painless recovery. He’ll go in Friday morning, the procedure will be Friday afternoon and we’ll be home Friday night. We have nursing care lined up for the weekend to watch him closely at night. He typically needs to be watched closely that 1st night and then he is usually ok after that.

We finally moved Mitchell into a Big Boy Bed! This is something we have been really thinking through, as there are so many things to think about with Mitchell. It has helped that we have him off of his CPAP machine. The problem comes when/if Mitchell is sick and needs the CPAP. If he sleeps well, there is no problem. The problem comes if he decides to get out of bed. If we don’t get to him before he decides to get out of bed, there is a good chance that he could pull out his trach or do damage to his trachea. So far Mitchell has done great in his new bed. The first couple nights it was hard to get him to sleep and for the first few weeks he would fall to sleep on the floor and we had to move him to the bed. I think it has been about a month now in his new bed and he is doing pretty well. We have found a way to get him to actually stay in bed to fall asleep. And, we have only had to put him on CPAP 1 night and that was just recently with his cold. We were fortunate to have a nurse that night, so it was stressed that she needed to be on high alert and listen carefully for any movement. I’m not really sure what we’ll do if we have to put him on it on a night without nursing care. I may have to sleep in his room. He really enjoys his new bed. (I’m sure some of it is his new found freedom!)

My ultrasound has come back as everything looks good. We’ve actually had 2-sorry no new pictures though-the first ones turned out better than the second ones. We had questioned a low placenta-however that has now moved and everything looks great.
We are still looking at a due date of July 9th/10th. My labs have come back good and blood pressure has been great.

Again, I will make sure to update after Mitchell’s bronch on Friday so you know how his airway looked. I will also work on new pictures this week!!! Again, you can pretty much expect an update every 1 ½ months or so—I’ll try to warn you when one is coming up so you can keep your eyes open for it.

Take care,
Paul, Katie and Mitchell

Thursday, April 3, 2008 8:30 AM CDT

I will try to update soon!!

Sunday, February 24, 2008 9:16 PM CST

OK-I promised an update-so I guess I’ll get on it.

Mitchell has been doing pretty well. He had an odd day last week where he had a fever for 103 basically all day. I didn’t want to bring him in as we had just been in recently and Mitchell respiratory wise was doing fine. SO-talked to Dr.Welle and he put him on some antibiotics because his culture he had taken the week before did show a bit higher growth than normal-not much so we weren’t going to treat him, but because of the fever we decided to jump on it. The lowest I got his temp was 101 and that was with 2 baths and Tylenol every 4 hours. He was fine after 24 hours of being on antibiotics though we kept him home the next couple days just to be certain.

Other than that Mitchell has been doing very well medically. He is totally off of his CPAP and even with a recent cold he only needed it a couple of hours, 2 different nights. We’ll see Dr.Kantak on the 19th and we’ll hopefully make plans to do another scope to see what his trachea is doing.

The check-up with Dr.Welle went well the other week. I had to be sure and tell him Mitchell’s latest achievement….which he was not sure if he was going to believe me or not. Mitchell lately has been SO interested in words and letters that he has decided to learn his ABCs. Mitchell has a bus that asks him to push a letter-Paul and I have finally realized that he knows at least 20 letters! We were shocked! (As was Dr.Welle) SO, Dr.Welle decided to put Mitchell to the test and asked him to point to a couple of letters on his folder. Mitchell got 4 out of 4 right! Dr. Welle just shook his head and smirked. Our next step is to work on the letter sounds-though I switched his bus to that mode and noticed he still got a few right so he knows some of those as well! What a smart boy we have!! We are very proud of him! We really try not to underestimate Mitchell however as he gets older and cannot communicate well, it is hard at times. This is a great reminder of just what he is capable of…we just have to give him the tools to express himself.

House update: We put our house up on the market the first week of February. Our house had revolving doors that first week. We were also lucky enough to get 2 offers-one on the 3rd day it was up and an even better one on the 5th day. To make a very long story short we have officially SOLD our house and we’ll be closing on Friday! The couple is allowing us to rent back until the end of June—so we are hoping that our house will be done and then we’ll have a smooth transition. We really couldn’t have been luckier-it really just all fell into place and the best part was that we only had to keep the house show shape for a week. Though we have really enjoyed a de-cluttered house, keeping a house in show shape 24 hours a day is tough. Our new house is a bit behind because of the cold weather-they are hoping to get a lot done this week as it is suppose to be warmer.

We had our 20-week ultrasound on Friday. We felt that it went really well though we wont know the “official” results until this next week. The ultrasound tech was very nice and really spent a lot of time with us. We also found out what we are having. I know I said we weren’t going to….but for once it was PAUL who couldn’t wait to “open the gift”. Many know it is usually me who is itching to open any gift…this time it was HIM. So, we found out and Mitchell is going to have a baby BROTHER! And though we’ll probably still have a girl and boy take home outfit ready…looking at the ultrasound I myself would be confused if it came out a girl. It was very obvious…so obvious I think we would’ve figured it out by the end of the ultrasound even had she not told us. We got some great pictures of the little guy and I’m sure Mitchell wouldn’t mind me posting one on his site.

I’ll add pictures sometime this week when I get a chance. I’ve had a pretty nasty cold myself so have been napping anytime Mitchell does. I’ll get them up when I can.

Take care,
Paul, Katie and Mitchell

Thursday, February 21, 2008 8:26 AM CST

Hopefully an update this weekend!

Monday, January 28, 2008 1:30 PM CST

Whew…we finally have a moment to let you know what we have been up too.

Mitchell had a big 1st a couple of weeks ago-On Thursday, January 17th Mitchell rode the school bus for the very first time! His nurse Leah when with him and then was at school with him. Mitchell wasn’t really sure what to think and then when I said goodbye he had a bit of a panic look on his face but waved. I’m glad that it was 14 below zero because it was just too cold to think about how my baby is growing up. Though I did fight back a couple tears as I ran back into the house. When I got into a quiet home BY MYSELF….I thought-“I only have 2 hours…I better get working! No time for tears!” Mitchell’s nurse said that he had a great time on the bus; another little boy got on and wanted to sit by him so his nurse slid over to across the aisle. However, Mitchell did feel the need to hold her hand the entire time he was on the bus. But, when it was time to get off the bus, Mitchell didn’t want to get off. I guess that is a good sign. He had a great time at school and didn’t mind me not being with him. (We really weren’t that worried about it) Since that day he has gotten on the bus again and I myself am really enjoying my 2 hours to myself.

That brings me to those 2 hours. Hum…..what does one do with that much time? Well, as you know we have been building a house. Which also means we are going to need to sell this house. So, Paul and I have been SO SO SO busy trying to get this place whipped into shape enough to put on the market. It will officially be on the market tomorrow. We actually had our first showing yesterday and it went well, but of course you just never know how long this process will take. We have also been having meetings about 3 times a week with different suppliers regarding the new house. We’ve met with the cabinet guy, the flooring guy, the plumbing place and now next week we meet again with the cabinet guy and flooring guy. It goes over and over again until we decide exactly what we want. It really has been fun and we have enjoyed it so far.

Mitchell has done okay through all of this. He has been fairly well behaved at our meetings, but we have noticed that he has been a little naughtier at home and we also got our first naughty report from school. (my words, not theirs) We have figured that with all of this house work (old and new), we haven’t been able to spend all of our time with Mitchell like we usually do. SO, I guess he has decided to rebel a bit. The last couple of days have been better, but we’ve been able to spend more time with him, as our house is now ready to show. And school, well, I had heard from his nurse that he really didn‘t have a good day. It appears that Mitchell just wanted to show them that he does have a rebellious side and that he isn’t always the sweet cute little boy they think he is. Mitchell sometimes gets into a mode where I think even he has a tough time controlling himself…we hope he outgrows this. At this point it is interesting trying to figure out when he is out of control and when he is just being naughty.

Medically, Mitchell is doing great. We have started to wean him off of his CPAP at night. Remember this is the machine that Mitchell use to be on 24 hours a day-we got him weaned to just using it at night (at about a year old) and now are working on getting him off of it completely. So far he is doing great, but the next 2 weeks will really be the test as we’ll be weaning him off of the hours he typically has apnea alarms. If he continues to have the same amount of alarms, we are fine, but if his numbers increase we’ll have to keep it on him for a little while longer, at least until we can get a scope done to see what is going on.

There really isn’t anything else going on. I myself have been feeling great. Baby seems to be doing well. I’ll have another appointment on Wednesday. In about 3 weeks I’ll have an ultrasound. I believe we’ll also have an extra one at 28 weeks unless Paul and I decide against it. At this point I really don’t have a lot of faith in the ultrasound department as they missed so much with Mitchell. Which brings me to the point of, “Are you going to find out if it’s a boy or girl?” My response….they couldn’t even detect a 1 inch gap on my son’s face or his heart on the wrong side….how can I trust them to give me the correct sex. SO…no we aren’t finding out. I wish we could, but I just don’t think that it would be worth it as I’m sure I wouldn’t believe them anyway. Plus at this point, Boy or Girl really isn’t all that important to us…we’d rather focus our energy on healthy. We’ll keep you updated though on how this little bean is growing. As of now my blood pressure is perfect and weight is doing well too. They wouldn’t expect my blood pressure to rise until another couple of months, but lets hope we just don’t have to worry about it at all.

We hope that you are enjoying the nicer weather-though I hear it is suppose to turn bad again tonight. Mitchell has LOVED playing out in the snow and has already figured out that it is fun to throw snow at mom.

Take care,
Paul, Katie and Mitchell

Monday, January 28, 2008 9:29 AM CST

New update hopefully today-with pictures!!!

Sunday, December 30, 2007 10:11 PM CST

We hope everyone had a safe and fun Christmas. We have a few things to update you on. I think we’ll start medically and then go to our Christmas fun.

Mitchell had his 3-year checkup right before Christmas. Wouldn’t you know, the little guy weighed in at 32 pounds. And, I heard Dr.Welle say something I never in my life thought I’d hear him say, “Mitchell, we’re going to have to be careful so you don’t get overweight”….WHAT?? After 3 years of cramming food into this kid and feeding him pancakes before his appointments so we could get just a few extra ounces (yes parents, it works….try it) it seems as though Mitchell is in danger of being “overweight”. Of course I laugh at this because I find it hard to believe that a little boy as active as Mitchell could ever be overweight. We have now dropped his formula intake a bit and he is now able to drink a glass of “real milk”. It was a great feeling to hear the words “over weight”. Like I said, we really worked so so so hard for 3 years to keep him from needing a feeding tube and so to reach this point is a fabulous feeling. He really wasn’t all that concerned, but they are just trying to be cautious, as there is an overweight issue in kids these days. Paul said, “Hey watch, Mitchell will be the only overweight trisomy 13 kid”. All joking aside, his appointment went well. Dr.Welle wants to try and start weaning him off of his CPAP at night. We’ll give him a few more weeks of feeling well and then we’ll start with a couple hours off each week. Before we even think about getting the trach out, he has to be off of his CPAP, so this is a good start. We’ll have another scope done this spring in hopes that there continues to be improvement in the strength of his trachea and then we’ll go from there. Mitchell also had an eye doctor appointment before Christmas. Mitchell indeed needs glasses. This is not a big surprise to Paul and I as we had discussed getting glasses for him 6 months ago when he was borderline needing them. His eyes aren’t horribly bad, but I am excited to see if the glasses make a difference in his development and day-to-day tasks. Grandma, Mitchell and I went and picked out some glasses. I was (and still am) a little nervous about how we are going to keep them on him, but when we got the glasses on Mitchell…he thought he was so cool. His little face just beamed as he looked into the mirror. Like Grandma said, “he’ll be fine as long as you keep a mirror handy so he can see himself.” Even the lady trying on her glasses next to him commented on how proud he looked when he saw himself. We should get his glasses in this week and I’ll be sure to post a picture!! He looks like Harry Potter with hearing aids (and a trach of course).

Christmas went well around here. We ended up having everyone up here, which was great. Though we’ve traveled with Mitchell, it really is a tough time of year to travel with the weather and cold/flu season, so we are so thankful that our families are willing to celebrate Christmas at our house. Grandpa and Grandma (my parents) came up for the weekend. We played hard and then had our traditional prime rib dinner. Mitchell got initiated into the family as this is the first year he was able to actually eat some prime rib. I must add that he absolutely loved it, which is impressive because he really isn’t into eating meat. Mitchell loved opening gifts and I think opened everyone’s gifts…not just his own. We had to be careful not to talk all that much, because if we did….our gifts would be opened. Grandpa and Grandma left on Christmas Eve morning after breakfast. Nana, Papa, KT and Jeff (Paul’s family) came up Christmas Eve for our second Christmas celebration. Unfortunately Mitchell was a little punk that day and actually now I think we know why…but we’ll cover that later. Mitchell ended up having a temp of 101-102 that day. Of course he still wanted to play but he was a little more low-key. I know Nana didn’t mind, as she was able to get in some good book reading sessions and rocking sessions. We had a great turkey meal and had a nice time visiting. Christmas Day we woke up and opened gifts. Once again, Mitchell loved opening the gifts. He actually really liked handing them out as well. He enjoyed all of the nice things he got and thankfully he felt better so he seemed to be back to his “normal self”. Again, thanks to our families for coming out for Christmas-it means a lot to us as at this point it would be so hard to make both family Christmas’s if we had to travel…so we are thankful that we are able to celebrate it with both families. Thanks.

We have all been just relaxing after the holiday. Paul was able to get up to Nevis to see his cousins and grandma. Mitchell and I stayed home as he was still just on the mend from his bronchitis he had. And, to be perfectly honest I was just too exhausted to go this time. (see…I can admit it when it is me and not Mitchell) Call it motherly intuition or something but I’m so glad we didn’t go. By the end of the night Mitchell was covered with a rash. I ended up taking him into the walk-in clinic and I’m not going to bore you with the experience but lets just say we aren’t sure what it is from. It appears that it is roseola, but we really aren’t sure—however, that would explain the odd fever on Christmas Eve. Today his rash seemed to be better but then this afternoon it seems to get more red again. It doesn’t seem to bother him though so that’s a good thing.

Other than that…not much going on here. Our house is well on it’s way. They started framing it so we are making occasional trips out to see how far it has come. I myself continue to feel pretty good. I have another appointment coming up this week and will be 13 weeks on Wednesday.

We ask that you continue to keep Paul’s sister’s friend Karie in your thoughts and prayers as she has a big week coming up. She will be having brain surgery on the 2nd to see what they can do about the tumors. She was very upset that she had to wait that long, but with the holiday, that was the 1st time they could get the #1 surgical crew in and hey, nobody wants to have any less than #1 when it comes to brain surgery. Paul and I both think the world of Karie (again after only meeting her once) and we continue to keep her and her family in our thoughts and prayers.

I’ll hopefully get a picture posted late this week of Mitchell with his new glasses, if not it means they haven’t come in yet and we’ll post one when they do. Take care and have a great New Years! I’m hoping to get Christmas pictures up tomorrow (Monday).

Happy New Year!!
Paul, Katie and Mitchell

Wednesday, December 19, 2007 8:57 PM CST

Sorry, I just haven't had time to update with all of Mitchell's Birthday pictures. I'll do one big update after Christmas-along with Birthday pictures and Christmas pictures! We also have his 3 year check up tomorrow as well as his eye doctor appointment. So come back after Christmas for some fun photos!! (and update)

We hope everyone has a safe and Merry Christmas.

We ask that you keep a few people in your prayers. A good friend of Paul's sister has overcome breast cancer and now has found out that now she has a couple of brain tumors. Karie is about our age with a couple of young kids and a great husband. She is staying strong, but I know she could use some extra prayers. We were fortunate to meet her this summer and I honestly felt like I'd known her forever. She is a fantastic person full of life that Paul and I really were impressed by. We also ask that you say a prayer for a local family. Their daughter passed away on Saturday after fighting a courageous battle with lymphoma. Nicole was 18; Paul knew her from the high school and I from working at her daycare when she was in elementary school. Please keep this family in your thoughts and prayers over the holiday season.

Take care and Merry Christmas!
Paul, Katie and Mitchell

Sunday, December 16, 2007 9:30 PM CST

Well, 3 years ago our little Mitchell was born. It was a day that started with such excitement and ended with so many different emotions. It is hard to believe that 3 years has gone by. We have been so so so fortunate that again we had another awesome year with Mitchell. He managed to spend all of his “2s” out of the hospital (except for some testing). The boy is really just so amazing. We love this day-though we always try to remember how lucky we are…it is a great day to just truly remember what that day was like and see how far Mitchell has come. I know birthdays are always special, but I like to think that Mitchell’s is just that much more special because it is 1 more year that we did it. He has overcome so many things; each day is truly a blessing.

This morning we all got ready for the day and then….opened gifts. We just couldn’t wait until tonight when we had cake and ice cream. Mitchell loved all of his gifts he got. Thank you for those who sent gifts. Mitchell enjoyed each one. Mitchell also got a lot of phone calls today! Now, he is a child of few words, but he just really enjoyed having everyone want to talk to him! By the end of the day he was not just waving to whomever was on the phone, but also doing some “talking”. He is like his dad in that he only wants to be on the phone for a short while, but he does like to hear familiar voices.

Tonight we had a nice little party for Mitchell. A few friends came over and we had some cake and ice cream. Of course we sang “Happy Birthday” to Mitchell and he then signed “more” after we were done. He loved watching everyone sing to him. He really got a kick out of it. After cake and ice cream we played a bit before it was time to go to bed.

We had a very nice day. Mitchell had a fun time playing with his gifts as well as visiting on the phone and also visiting at his party. We’ll post some pictures tomorrow.

Take care,
Paul, Katie and Mitchell

Sunday, December 16, 2007 2:12 PM CST

Happy Birthday Mitchell!! We will update with Birthday pictures soon!

Wednesday, December 5, 2007 3:28 PM CST

We hope you are all having fun digging out of our recent snow….and if you aren’t, I wish I were where you are! We are doing great here. We have lots to update you on.

First of all we have some more exciting news to share. As you can see by the picture; Mitchell is going to be a Big Brother! As of now my due date is July 9th. Today Paul, Mitchell and I went to my first appointment. My doctor was very excited to see Mitchell again. She had seen him last year but is always amazed and so happy to see how well he is doing. The appointment went well. I had an ultrasound and yes there is only 1 baby with a strong heart-beat. We weren’t expecting 2, but you never know with us….could you imagine! As of now we are planning on no extra testing. We’ll have an extra ultrasound at 28 weeks just to make sure things are okay but that is it unless we change our minds further down the road. Again, our chances of having another baby with Mitchell’s condition is about 1 percent. The chances of me getting sick again (remember I had HELLP syndrome-which means severe pre-eclampsea) is about 30 percent., We could certainly use some extra prayers these next 7 months for the baby’s health as well as mine. We are very excited and are looking forward to a completely crazy summer. Nothing like moving into a new house and having a new baby within months of each other. It should be fun.

I meant to post after Thanksgiving, but we wanted to wait until we could share our exciting news and wanted to wait until the ultrasound. We traveled to Wisconsin for Thanksgiving. We had a great time. Mitchell had a lot of fun playing with Grandpa and Grandma’s new puppy. We were able to visit with family at Grandpa and Grandma Millers on Thanksgiving Day. Mitchell of course was the center of attention and enjoyed every minute of it! We also got a chance to visit with our good friends Tony and Amanda and their little Luciana. It’s always so nice to get back home for a couple days.

Mitchell is doing well at school. He seems to be making some great progress. We have his annual meeting next Friday. They have been testing Mitchell as it is time for his 3- year evaluation. He sure is a tricky guy to figure out. He is still really struggling with verbal communication, but his signing is coming along nicely. Our newest sign is “teacher”. We’ll let you know how the meeting goes. We’ll also be talking about getting a nurse in the classroom for Mitchell. The school has approved it and now we’re just waiting for the agency to get someone to fill the position. I think this will be great for both Mitchell and myself. I am anticipating how difficult it is going to be to leave him somewhere without me being there, but of course we’ll make sure he is in good hands and it will be one more step towards independence for him. (as I’m not sure if you’ve noticed…but he isn’t a baby anymore….sniffle sniffle)

Medically, Mitchell has been doing pretty well. He just recently seems to be catching something. I haven’t quite figured out what it is yet, but give me a couple days. We’re thinking that it is either the start of a cold or an infection in his trach. We usually try to let him fight it off for a week or so and if he is still having a tough time, we’ll bring him in. He acts fine during the day but of course at night he has a harder time breathing and needs some nebs and a little oxygen. He has his 3-year check up in a couple of weeks. I believe we have a few other check-ups coming up, I think vision is one of them. We’ll let you know how they go.

I think that is about it. There are so many changes going on right now. Paul and I spend at least 1 day of the weekend trying to pack and go through things. We actually have done pretty well, and yet you look at the house and it still looks like we haven’t touched a thing. Our hope is that we get the majority of the things packed early so we have just major things to pack at the end. Poor Mitchell is wondering where all of his toys are going. Don’t worry; he isn’t going without…he has PLENTY, I think he can handle having some packed away.

We hope everyone is doing well. Thanks for the prayers.

Take care,
Paul, Katie and Mitchell

Tuesday, December 4, 2007 6:54 PM CST

I'll try and update tomorrow!! (Wednesday)

Thursday, November 1, 2007 2:22 PM CDT

We hope everyone had a great and safe Halloween. As you can see, Mitchell went as a doctor. We went to just a couple of our friends houses and then hit the cul-de-sac. He really wasn’t sure what was going on until we started trick-or-treating at the neighbors. After the first 2 houses he started running to the next house and looking for his “button”. We brought a “button” from school that said, “trick-or-treat” when you pushed it. Mitchell really had a great time. He was very very tired when we got home and very very wound up.

We’ve really had a lot going on lately. I think that this is the hardest thing about having a child with special needs-there is always a “battle”. If it isn’t insurance, it’s school, if it isn’t school, it’s the nursing agency…on and on. We have been working with the school trying to get a nurse for Mitchell as once he turns 3 his parent group turns into a group without parents. Obviously with Mitchell’s trach, he can’t be without someone who knows his cares as well as how to handle an emergency. I will spare you all of the details, but after many months of back and forth discussions with numerous people from the school, they have agreed that Mitchell does need a nurse to “keep an eye on him” throughout the time he is at school. For me there is a fine line between wanting him to be independent but making sure he is safe and this is the only way it could happen. The nurse will just be in the corner watching him from a distance so he doesn’t feel like he has someone hanging on him all the time. I myself just get excited at the thought of having a couple hours to myself…though I know the first few times it will be weird. (ok-I’m sure I’ll be sad too….my little boy is growing up)

As I said-there is always a battle waiting around the corner…I was so thrilled about the schools decision and yet only 3 hours later we got some tough news that our best nurse wont do nights anymore (health issues). So, onto the next battle: trying to find a new nurse. It seems as though we have having a change of nurses lately. We just got one trained in and we’ll be starting another one soon. As far as I know we are going to only have 1 really tough week. Next week-Monday through Friday we have no night coverage. We have never had him for more than 4 nights and knowing that 4 nights is a big challenge, we aren’t looking forward to 5 nights. I’m not really sure how this is going to work, but we’ll figure it out. They have given us nursing care during the day on Wednesday so that I can take a little time to rest and rejuvenate for the second half of the week. So, if you call next week and I seem “short”, that is why. It does appear that they have found another nurse; we haven’t met her yet but plan too in the near future. I’m hoping that once we get this figured out, that we can just idol for a bit without any new battles. (You can always hope can’t you)

Mitchell is dong very well. He really is growing up right before our eyes. It is hard to believe that our little baby that we were so so concerned about will be 3 in a month and a half. We still take time to watch him and smile and take in all that he has accomplished in such a short time. We are still so grateful for all of your prayers and for all of you that have continued to follow Mitchell’s progress.

Mitchell has a dentist appointment today. I’m expecting that to be very exciting. Other than that, we have no appointments planned for the next month or so! We hope you enjoy the pictures.

Take care,
Paul, Katie and Mitchell

Thursday, November 1, 2007 7:23 AM CDT

I'm working on the photos and a new entry...come back tonight and check. Thanks!!

Monday, October 22, 2007 9:21 PM CDT

Mitchell is doing well. He is really enjoying school. Today they had him bouncing on a ball while he “worked” with the teacher. The philosophy is that all children shift somewhat when working and if you can give them that input without them having to do it themselves-then they can concentrate harder. (hopefully that makes sense) Anyway, it worked GREAT for Mitchell. He was signing more signs than we’d ever seen at one time! He also stayed on-task much longer. It will be interesting to see how he does now the next few times-especially when it isn’t so “new” anymore. I hope that we have unlocked the key to his way of learning.

We have trained in a new nurse. She is doing well and I’m sure we’ll really like her. She is a younger nurse but has been working for about 4 years and seems to be very smart. Mitchell seems to really like her so that’s good. Insurance is staying on our good side as far as nursing care. They tried pulling a fast one on us last month saying that we maxed out our home nursing benefit for the year. Little did they know that I know that benefit book from front to back and I also keep our nursing hours and could prove that we have not me the max. They decided that we were correct and didn’t even make us appeal the decision. I’m sure by now they cringe when I call or have a red alert on Mitchell’s file saying difficult parent…I like to think I’m not difficult, just fighting for what he needs.

Health wise Mitchell has done very well. Right now he is on an antibiotic for an infection in his trach. I think it has been a good couple months since he was on antibiotics so we’ve done well. Mitchell has hit that “toddler” stage of toddling around and falling a lot. He ran into the doorframe the other day, which left, a very nice goose egg and gash in his head. It didn’t bleed because the last layer of skin didn’t break open-I don’t know what’s worse-not opening up but now looks like he has a big gash that we didn’t get a stitch in or breaking open and needing a stitch. I guess either way he would have a scar and as Paul says, “Katie, scars are cool for guys”. After that fall he was down in the kitchen and slipped on the floor and hit his head again but in the back. No bleeding, but he did have a small breathing episode. Once again just God’s little way of reminding us that he isn’t as strong respiratory wise as we sometimes treat him. He did very well considering and actually I think the majority of the episode was because he was mad at me for taking out the amboo bag. (amboo bag is what we give him breaths and oxygen with) He seems to be more apt to have one of these episodes if he has an infection, so I’m guessing that is what sparked it. (and of course the pain of hitting his head) We now keep slippers on him so he doesn’t slip.

Paul and I have some exciting news to share. We have decided to build a new house. It is something that we’ve always wanted to do and we have finally made the decision to just go for it. I’ll post some pictures. We already have it dug as well as the walls poured. I think we are going to just love the new location. It is only about a mile or so from our house now but behind our back yard is 40 acres that will just be 40 acres of woods and field and of course the river. (which belongs to an association) But…don’t loose any sleep over that—we are actually in one of the highest spots in Fargo, Moorhead so the flood line doesn’t even reach our property. We are both very excited. I just can’t wait to just let Mitchell RUN! (As you can see by the picture he is already practicing)

Not much else new here. Paul has been busy with football. Tomorrow (Tuesday) is their first playoff game. (As well as his Birthday) We’ve had Grandma up and Nana up playing. They just can’t believe how different Mitchell looks each time they see him. I will make sure I update after Halloween so you can see what our little goblin dresses up as. I’ll also post new pictures sometime on Tuesday so if they aren’t new-check back.

Take care,
Paul, Katie and Mitchell

Wednesday, September 26, 2007 7:35 PM CDT

Well, we have been keeping busy with many different things. Mitchell and Paul started school again. It has been nice getting back into a school routine and yet Mitchell and I miss having Paul home. I think Mitchell signed “Dad bye bye” about 1000 times that first week. He sure got use to having his Dad home during the summer. (I also loved the extra hands)

Mitchell’s school is going very well. He is enjoying playing with the other kids and is really starting to show what he is all about. I think every week I say to Paul, “you wont believe what Mitchell did today!” I’m so excited to see where he is going developmentally, he is just doing great! We’ve been working on his speaking valve and he has surprised everyone with what comes out of his mouth from time to time. He surprised us all when he blurted out “orange”. I think the speech teacher just about fell off of her chair. (I know I did) He doesn’t always speak clearly but once in awhile he will blurt out a word. He tries so hard-again, I can’t say enough-this little boy has more drive than I have ever seen. He watches your mouth to see what it is doing and he just tries to get his to do the same. He wants to talk and I have no doubt in my mind that he will achieve it someday.

Mitchell also showed me the other day just how much he has up in that little head of his. I was getting him in his car seat after grocery shopping and a truck pulled in right aside us-Mitchell looked at the truck and signed “Dad”. I looked at him and then at the truck…well, the truck was the same color as Paul’s. I know that for some this may not seem like much…for us…this is HUGE. For Mitchell to be able to piece this all together just shows what he is capable of. It was a very exciting moment for me-and actually I have to admit I actually got tears in my eyes-in a grocery store parking lot!

Medically Mitchell is doing well. He has had a little cold this last week, but really hasn’t knocked him down all that much. We’ll be going to the dentist for a checkup sometime soon. We’ve also met with the audiologist and ENT about Mitchell’s hearing. Mitchell seems to have a conductive hearing loss. This is actually better than we thought—we thought his hearing was due to something neurologically. Now that it is conductive, this means that hearing aids should work better for him and there is a slight possibility that it could improve. We aren’t holding our breaths for this, but it is great knowing that it is possible. There are also possibilities for maybe a surgery that could help his hearing. These all very big “maybes” but at least we know there may be options. These are things that we’ll revisit in years. Typically they don’t offer these type of surgeries until the child is much much older. (like 5-10 years)

We have also had some changes with nursing care. One of our nurses decided she couldn’t do nights anymore-so once again we are searching for a new nurse. It sounds like we’ll be meeting a new one at the end of the week. She comes highly recommend so we’re excited to meet her. We also are going through a change at the administration level as well. Ruth, our nursing coordinator is leaving after this week. This is really going to be a tough change for me. I really appreciate the job she does—she works very hard at getting us the hours we need and the qualified staff we need. I’m not sure what is going to happen but she is willing to stay “on-call” until they find someone to fill her spot. She is getting the October schedule set so we hopefully wont have to worry too much.

That is about all that is going on in the wonderful world of Mitchell. I have some new photos to share-including Mitchell’s 1st Football game and some school pictures. He sure is getting to be a little boy and not Mom’s baby. I’ll get them up by Friday.

One last thing: Many of you know how important this site has been to us and our friends and family (mainly you). It has been an easy way to update everyone on Mitchell’s condition and progress. I honestly don’t know what we would’ve done with it during the first year when things were so tough. Many times it was hard for me to talk on the phone as I was at a loss for words and found it very easy to put my thoughts, feelings and facts online. It has been a very handy not only to update but also therapeutic for us to be able to get our feelings and experience out there. It is important for you to know that this is a free service to us. We typically don’t ask for anything but I just want to let you know that Caring Bridge does accept donations so they can continue to keep this service free to families who want to keep friends and family updated on a love one. Don’t feel like you have to do this…I just know that often times people want to donate to something or some cause but just don’t know what. So, just thought I’d put out an idea.

Take care,
Paul, Katie and Mitchell

Tuesday, August 28, 2007 1:40 PM CDT

I know it has been awhile and again we have lots to share. We have been so busy this summer; hope you don’t mind the one entry a month. Think of it as no news is good news.

I’ll try to start at the beginning and hopefully won’t miss anything. I will also try and make it short and sweet…

We made another trip to Amery in August. We went to spend some time with our good friends Amanda and Tony as well as their new baby Luciana. (and of course to see Grandpa and Grandma) We had a great time visiting. Mitchell wasn’t sure what to think of the new baby but wouldn’t come around me when I was holding her. He did give her a few hugs though.

We also went to Nevis for the Pam Lindow Golf Tournament. It is something we try to do every year but haven’t been able to since Mitchell was born. It is a golf scramble and all proceeds go to the Pam Lindow Scholarship Fund. Paul and I played and Nana stayed at the cabin with Mitchell. We all had a great time….and Nana sure was tired after a day of watching Mitchell. After the tournament we went back to the cabin and had a picnic with many of the cousins. Mitchell had a great time playing with all of the cousins. We had a great time!

We FINALLY were able to get Mitchell’s tubes put in his ears. Mitchell did great during the surgery and came out with 2 tubes and also had a hearing test done. The hearing test came back the same as the others. (Moderate hearing loss in both ears) However, they were thinking about upsizing his trach, but the ENT decided to keep the same size in. This is great because I think he would loose some of his voice with a bigger trach, so I was happy with this decision. It is great to get this finally over. We have been trying for 6 months now.

Lastly….this weekend we had our big appointment at Mayo Clinic. This was for Mitchell’s sleep apnea. We went down on Thursday and came home yesterday. We stayed at Nana and Papa’s house and then were able to get to the appointments from there. It sure beat having to stay in a hotel all weekend! We stayed pretty busy all weekend. Mitchell had a morning appointment and then Mitchell and I stayed overnight Friday night for the sleep study. We got the results from the sleep study during our Monday morning appointment. The doctor said that Mitchell’s apnea is “normal”. He had 0-1 episodes/hour, which is within the normal range. This was nice to hear, the doctor also said that it was obstructive apnea and not central. This is also good news because central apnea is very hard to control. At the end of his appointment I asked the doctor if he had worked with a lot of trisomy 13 children. He said that in his 25 years he has worked with a lot of children and infants with chromosomal abnormalities and yes a few with trisomy 13 but that he was unsure of the number. Then, he went on and said, “but I have to tell you this….Mitchell has certainly opened my eyes and has made me realize just what these children can do.” This statement just made me so proud of Mitchell (and his dad was beaming too when he said this). It just comes back to-God puts people on this earth for a reason. We are so fortunate to be his parents. To think that our son can change a professional’s outlook on life with just 2 short office visits is truly amazing to me. He certainly is a very special little boy. The doctor made a couple of recommendations; one was to increase the delay time on our apnea monitor so that we only catch the long apneas and the second was to come back right before they decide to take the trach out in a few years-or however long it is. I talked to Dr.Welle about our trip and he laughed and said-I bet they were impressed by him. He is still concerned about the long apnea alarms that he had but wanted to wait to read the report before we decided what to do with his alarm.

We also had “fun” time during the weekend. Mitchell enjoyed playing with Nana and Papa during our “down” times at home. Paul had a football scrimmage in Apple Valley so he did that on Saturday. When he got home the three of us strolled downtown Hastings for the old car show. We went for supper and of course had to end it with an ice cream cone. Sunday we met Aunt KT and Uncle Jeff at the Minnesota Zoo. We had a great time walking around. Mitchell of course loved the farm section because he could pet those animals. He also loved the huge aquarium and tried to chase the fish. He also thought the dolphins were pretty funny when they’d zoom by in the water. That afternoon we had a big family dinner at Nana and Papa’s house. Monday we packed up and headed home (after our Mayo appointment). We had a great few days….very very busy but it was fun.

We hope everyone has enjoyed the summer. It is hard to believe that it is already over. Paul started school workshops today and school officially starts in a week. Football has started and a new kind of busy starts. Mitchell will start school again next week. He will have a new teacher and a new program though it will be very similar. Paul and I have just had an awesome summer. We thank everyone for letting us come and visit. Paul said that he missed baseball a little bit, but would’ve missed seeing his son enjoy so many new things so much more. I know that he was happy that he made the decision to stay home with us this summer and though I really did like baseball games….I really loved having so much family time. (I'll try and get new pictures up soon)

Take care,
Paul, Katie and Mitchell

Monday, August 27, 2007 4:54 PM CDT

Update coming this week!!

Monday, July 30, 2007 1:18 PM CDT

Wow! It has been almost a month since we wrote last-we have lots to say and will try to keep it short. I will first start medically and then go onto our last month of traveling.

There hasn’t been anything all that exciting with Mitchell medically. His doctor has put him on caffeine for his sleep apnea. We are very surprised that it really hasn’t seemed to affect how he acts during the day. However, we have discovered that if we give him the caffeine after 3:30 he has a tougher time getting to bed. It appears that the caffeine has not really helped his apnea but he does seem to sleep better….not sure what that means. We will talk to Dr.Welle after he has been on it for a month and then we will decide where to go from there. Right now we have an appointment scheduled for Mayo in August. Mitchell is supposed to get a sleep study. I’m actually hoping that the caffeine works and then we’ll cancel the appointment. Mitchell actually had one of his breathing episodes a couple of weeks ago. This was very disappointing as we thought he had outgrown them. I feel that this is God’s way of reminding us that we always have to be prepared. Really, Mitchell has been doing great. We have been able to travel here and there and it has been great! We have a lot of pictures to share so I’ll try to get as many in as possible. So, here is a short summary of the last month’s events.

4th of July: We split up the week with two trips. We went to my Grandpa’s cabin for the weekend. Mitchell had a terrific time with everyone, but LOVED all of the dogs. He had a great time playing fetch with them. We all had a great weekend. Paul was the big fisherman of the weekend-he had a great time catching all of the walleye. We came home for a couple of days of rest and then spent a few nights up in Nevis. Mitchell was able to go on his first pontoon ride. I think he enjoyed it but then he got a little sick. I hope that it was just a fluke-maybe we just know not to give him anything to eat or drink before going for a ride. We also had our friends from Moorhead stop by. The dads went golfing and moms and Nana went to play at the park. Mitchell had a great time playing with buddy Max, I had a great time chatting with Jenny and Nana had fun snapping pictures and holding Charlie. It was a fun couple of days.

After the busy week we decided to stay home for a bit. We took Mitchell to the Fargo Zoo and are hoping to make it to the Wahpeton Zoo yet this summer. Mitchell just loved the goats and the little monkeys they had. We took him last year, but I think he was old enough to enjoy it a little more. He really enjoys being around animals.

Beckett (my brother) and Jamie came up for a visit. We were supposed to meet them up at Grandpa’s cabin, but ended up canceling because Mitchell had a touch of the stomach flu. So, Beckett, Jamie and Mom came up to visit. They were able to get some Mitchell time and enjoyed seeing how big and crazy he has gotten. Mitchell enjoyed the attention. We had a 7-7 nursing shift so we were able to go out for supper. It was really nice to spend some time with them.

Just this weekend we went to my cousin’s wedding. It was so nice to finally be able to make a family event away from home. Mitchell had his first stay in a hotel room and did great. Mitchell sat pretty well during the wedding and had a blast at the reception. I told him that if we got through the day without spitting up I’d be happy…and we did. He ate so well at the reception and was such a good boy. Once the dance started….watch out! Mitchell was just a wild man wanting to dance. We had to pass him around because we were all getting so tired of dancing. I’m so glad that we were able to make it. It was so nice to see so many people that I haven’t seen for a couple of years. I also really enjoyed showing Mitchell off. One of my highlights was seeing the photographer taking many pictures of Mitchell. Then he came up to me and commented on what a beautiful smile he has. I know that everyone loves hearing good things about their kids, but this just seemed a little extra special. We had a terrific time.

I’m sure I missed something, but that is all I can remember at this point. August will be busy as well. We have some more small trips planned as well as Mitchell’s ear tubes going in and also his testing at Mayo. I will try to update again soon. As you can see, it is getting harder and harder as we seem to be getting busier and busier.

Take care
Paul, Katie and Mitchell

Wednesday, July 18, 2007 5:03 PM CDT

No we haven't forgotten about you....we will try and update early next week with lots of new pictures and lots to say.

Hope you are enjoying summer!
Paul, Katie and Mitchell

Thursday, June 21, 2007 11:33 AM CDT

Once again we have a lot to post. I hope I don’t forget something. I’ll try to go in order.

The hospital called and they had a last minute opening for a 24-hour EEG a few weeks ago. We went in on a Thursday morning and were discharged the next day in the afternoon. Mitchell really had a tough time at the beginning. It is really getting hard as he gets older and more awhere of what is going on. I sure am glad that we aren’t in the hospital a lot! They couldn’t get the probes glued onto his head because he was fighting it and then would get so mad that he would sweat and then they couldn’t get the glue to stick. To make a very long story short, we finally got the probes on when Mitchell took his nap. After they were on, he was a trooper. He didn’t mind being in the crib the whole time except for when the tech wanted to mess with the probes…then he would get mad.
They started us out on the Peds. Floor and we only lasted about an hour and then the nurses decided that they didn’t feel comfortable with Mitchell so we were sent to PICU. He didn’t do anything that would cause them to be alarmed, but I think that they were just being cautious and being he has apnea and a trach-they just wanted to be safe. Mitchell had one of his apnea alarms during the EEG. This is exactly what we wanted him to do.
We do not have the results yet, we should know late next week. Again, the EEG was to rule out seizures that could be causing the apnea. Dr.Welle and I don’t think that this is what it is, but it is always nice to rule things out. We all enjoyed seeing all of the PICU nurses again. They all couldn’t believe how big Mitchell has gotten….he sure isn’t our little baby anymore.

Our family made another big trip this last weekend. We went to Hastings (where Paul is from) for the first time. Once again Mitchell was a perfect traveler. He did VERY well in the car. He really doesn’t even need to be entertained; he just enjoys looking out the window. Like Amery, there were so many people who had been praying for Mitchell and they wanted to meet this guy that they have read so much about. (Once again to many to list….sorry) Nana and Papa had a little open house for Mitchell. A lot of people came and Mitchell gave everyone a nice hug. Mitchell loved all of the attention and thought the cake was very yummy. There were even a few kids to play with. We stayed for 3 nights so we had plenty of time to visit and play. Mitchell got to play with some of dad’s old toys. I think Nana had fun reminiscing when taking them out and Mitchell enjoyed playing with them. We also went and visited some family friends. It was hot that day so they were all out in the pool. Mitchell was able to get his feet wet but unfortunately because of his trach, he couldn’t get in the pool. Paul and I had him in-between us for a while and we both held him and could feel him try to jump in once in awhile. The other big event during the weekend was being able to take Mitchell to the Mall Of America! Paul and I (before Mitchell) tried to get there once a year and so Paul said that that’s what he wanted to do for Father’s Day. (I think the only time I’ve EVER heard him say HE wanted to go shopping!) We lucked out, the mall was not busy at all, it was perfect! We were even able to let Mitchell run around and we didn’t have to worry about the crowds. He was very good at the mall. Mitchell went on the escalator for the first time and then that is all he wanted to do. (typical) We had a great time in Hastings. Mitchell slept well and only had 1 apnea alarm. We all enjoyed seeing Nana, Papa, KT and Jeff and of course all of you who came to see Mitchell. Thanks for a great weekend!!

Yesterday Mitchell had an eye doctor appointment. He is a little farsighted but the doctor said that isn’t unusual for a child his age. He is on the borderline for needing glasses. Because he seems to get around so well and is not showing any signs of needing them, we’ll wait. We’ll have another appointment in 6 months. We are hoping that Mitchell’s eyes will get a little better with age or at least hold off until he is a little older.

We also went to a Blues baseball game yesterday. Mitchell loved walking around and would give an occasional hug here and there. Paul enjoyed talking to people at the game and I enjoyed the nice weather (and the game of course).

I’ll let you know what we find out about the EEG….guessing it will come back as normal. Hope you are enjoying the nice weather. (New pictures are soon to come)

Take care,
Paul, Katie and Mitchell

Monday, June 18, 2007 10:09 PM CDT

I'll be updating soon....lots to say and so little time.
The goal is new pictures and update by the end of the week.
Take care-

Tuesday, June 5, 2007 12:13 AM CDT

It is hard to believe that it is already June!! We have lots to share. Paul is finished with school and we have begun our summer adventures. I will post pictures as soon as I can and will get a new slide show going.

Memorial Day weekend we decided to go to the cabin in Nevis. There we hung out with Uncle Joe, Aunt KT and Jeff. We had a great time. Mitchell did pretty well; but the first night was pretty rough on him. (He had a lot of alarms) After that first night he did very well. Mitchell had been battling a cold or allergies so it was a tough decision on if we should go or not-he handled it pretty well though. Mitchell had lots of fun playing with everyone. He was able to spend some extra time with Uncle Joe before he headed back to New Zealand. We saw Great Grandma Elsie and she was very impressed with Mitchell’s walking and energy level. Mitchell also got a chance to catch up with cousin Cade again and also met a few other new cousins. We all had a nice relaxing time.

This weekend was also a very big weekend for us. We had planned to take Mitchell to Grandma and Grandpa’s house in Wisconsin. Of course the decision to take Mitchell anywhere isn’t made until the day of the event-but we were determined to make this trip. By Friday, Mitchell seemed to be feeling pretty good and had had a couple very good nights at home. This gave us the confidence we needed to make the trip. Mitchell did super in the car. He only slept for about 45 minutes and then he just looked around and snacked. He was still smiling after 4 hours but shortly after that it was about time to get out. He would sign all done and then all done dad. (Paul was driving) We stopped at Great Grandpa and Grandma Cordes and was excited to see all of their animals. We had a very nice visit.

When we got to Grandma and Grandpa’s house and Grandma peeked in the car door, Mitchell got very excited. The house basically had a revolving door the entire weekend. We kept Mitchell at home the entire time so that we wouldn’t miss anyone. There were so many people that had been praying for Mitchell the last two years and had only been able to see him on his website; there were lots who wanted to see him in person. We tried to stick to Mitchell’s schedule and everyone was very respectful of that. There really are just too many people to name, but Mitchell loved seeing everyone; family friends and relatives. He was quite the little entertainer. We all enjoyed showing him off. Paul and I were both able to get away a little on Saturday. I had a baby shower to go to and Paul played paintball with some of my friend’s husbands. Grandpa and Grandma enjoyed holding down the fort and were happy to show Mitchell off by themselves. Saturday night we were able to have a bonfire after Mitchell had gone to bed. It was a perfect night for it. Mitchell had such a great first night that we decided to stay an extra night, so a total of 3 nights. I didn’t think that he would give us any problems (though you never know), but I also didn’t think he would have 3 great nights in a row….must be Wisconsin. He had no apnea alarms and slept very well, only waking up briefly just once.
On the way home Mitchell didn’t fall asleep in the car until we hit the Moorhead exit…this actually worked out great because we hurried him into his crib and Paul and I also got a much-needed nap.

I’ll try to post as many pictures as I have. Sorry, we missed a couple of visitors. We tried to get everyone, but sometimes it just got busy and we missed a few. As for summer-like I said, Paul is now off for the summer. He will be doing some things for football here and there but will not be coaching baseball. Mitchell was a little confused this morning when he saw Paul. He kept waving bye to him and then at one point tried to push him out the door….change throws him off. I think he’ll get use to having both of us home pretty soon and will really enjoy it. We have plans for the house and the yard this summer. (We’ll see how much we get done)

Thanks Grandpa/Grandma (Mom and Dad) for a great weekend. We had a lot of fun and it was great to see that Mitchell handled it with ease. We also thank all of those who came to visit and for all of the prayers you have made throughout the last couple of years for us.

Take care,
Paul, Katie and Mitchell

Thursday, May 17, 2007 12:52 AM CDT

We have decided to cancel Mitchell’s tube surgery. He ended up needing a little oxygen last night to keep his saturations up. He is a little wheezy and has a lot of secretions. His sputum culture came back clean. This is great and actually I think the first time this has happened. This means that he either has a cold or allergies. We’ll be waiting for the ENT office to call and reschedule the procedure. We’ll let you know what the plan is as soon as we know.

Last weekend we went to see Mitchell’s idol “Rachel” from his signing movies (Signing Time). Mitchell acted a lot like last year-he was unsure of whom she was until she started singing and signing-then Mitchell was all ears and eyes! I think he enjoyed watching her as long as she was singing a song that he knew. Nana and Papa were able to come with us. They came down to visit for the day and were up for the adventure. We all had a great time. We surprised Nana with asking her to change Mitchell’s trach. She did a great job, as did Mitchell.

I forgot to mention that Mitchell had a great time with his great-grandpa Jim and Sandy a few weeks ago. Yesterday Mitchell got to play with Great-Grandpa and Grandma Cordes. This was Great-Grandpa’s first time seeing Mitchell and he was very impressed. Godmother Missy also stopped by with Mitchell’s new cousin Eli. Mitchell couldn’t stop smiling at little Eli.

When in for our pre-op the other day, Dr Welle and I had a number or things to talk about. Spitting up/Vomiting: This seems to be continuing. It will be really bad for a couple of weeks and then gets better. Dr Welle feels that Mitchell is so sensitive and anything can trigger this gagging response. There is only one thing that Dr.Welle feels may help. There is a procedure called a nissen fundoplication. This is a surgical procedure with many negative side effects and is not recommended for those who have had pyloric stenosis. (which Mitchell has had) It looks like at this point waiting it out for at least a little while may be our only choice. I’m not sure how much longer we’ll wait, but if this doesn’t get better soon we may ask to see a GI doctor. Apnea: Mitchell’s latest apnea download showed a number of apnea episodes. The doctor that reads the apnea downloads also makes recommendations. He suggested that we try a caffeine therapy treatment to see if this would help with Mitchell’s apnea. Those of you who have seen Mitchell in person are probably getting a good laugh right now. Dr.Welle and I agreed that trying the caffeine treatments might do more harm than good at this time. Mitchell is a very very active little boy. If you recall, we had a tough time when he was getting the steroids. At that time Mitchell was called “taz” as in the Tasmanian devil because that is the way he acted. We are concerned that the caffeine would have a similar affect on Mitchell (if not worse). Caffeine could also have a negative affect on his reflux, which in turn could make him spit up more. At this time we will continue to monitor his apnea closely. We are still working on getting the EEG done as well.

Lastly, our insurance battle continues. The school board voted on switching insurance carriers in July. We have already been informed that they refuse to pay for Mitchell’s nursing care. And actually they made the bold statement that the school district would be better off insurance wise if we allowed Mitchell’s MA to pay for nursing instead of the district’s insurance. This itself shows me that they know Mitchell needs nursing care. I could go on and on about this and wont bore you with my ranting and raving. But, believe me, this isn’t over-we’ll do all the appealing we can. I feel that they shot themselves in the foot with their comment about wanting MA to pay for it.

I’ll stop now… Mitchell really doesn’t seem sick, he just has a lot of extra secretions. I’m actually thinking it is allergies as he started this right around the time Paul mowed and the trees started to get flowers on them. I’ll probably try and update next week and let you know how he is doing. I've got some new pictures up, I'll try and get the slide show updated by tomorrow.

Take care,
Paul, Katie and Mitchell

Tuesday, May 15, 2007 10:00 PM CDT

We have a lot to update you on. Unfortunately we do not know if we are going to go ahead with getting the tubes in on Friday. We are going to give Mitchell another day before we decide. I think we should know by tomorrow afternoon. I will be working on an update then. In the meantime, I’ll try to get some new pictures up as well.

More tomorrow,
Paul, Katie and Mitchell

Monday, May 14, 2007 5:43 PM CDT

I will try and update tomorrow (Tuesday) after Mitchell's appointment with Dr.Welle. (Pre-op. appointment for his tubes)

Tuesday, May 1, 2007 12:30 AM CDT

There are a few new things to update you on. First being I had forgotten to write about running into one of the neonatologists that Mitchell had in the NICU. Mitchell and I were walking around at the mall and I saw him so I stopped to re-introduce myself. Of course I didn’t expect him to know me (or Mitchell) by face, but the minute I said Mitchell’s name and mosaic t13, he knew exactly who we were. It was really nice to be able to brag about how well Mitchell is doing. He was shocked at how big Mitchell has gotten and also seemed shocked to hear that he eats everything orally. Dr. Altoff was the doctor on the night Mitchell was born and he was one of the main doctors that had to tell us what was going on with Mitchell. He is a super doctor and he was always very positive and yet realistic at the same time. He seemed so pleased to see Mitchell again and told us that we should stop up in the NICU sometime so we can see the new facility as well as so the staff can see how Mitchell is doing. I really enjoyed talking to him.

Our new nurse has been working every other week. She has been doing a nice job with Mitchell. If you know Mitchell, he tries to get the newbies hooked into doing exactly what he wants. She seems to be wise to this and isn’t falling for some of Mitchell’s typical tricks. He gave her a run for her money the first night this week, spitting up all over everything. If you’ve ever seen Mitchell spit up…its never just a little bit. She has done well though and Mitchell seems to like her. We still have the other 2 nurses, they are just trying to add more to our case just in case one of the others wants to take time off, then we wont be strapped for help.

One exciting thing going on right now is that the school district has decided to change insurance carriers. I’ve already talked to district reps as well as the insurance reps. It sounds like we will once again have to fight for the insurance company to pay for a portion of Mitchell’s nursing care. At this point, this is just speculation, but the rep told me that she thought a trach was more “maintenance” and not “skilled-care”. The good thing is that Mitchell’s medical assistance is in place so we will not actually loose nursing care. We are basically just fighting for who is going to pay for it. We’ll keep you updated on what is happening.

Other than that, there is not much new. We have been enjoying our time outside and we’ve kept busy with school. We hope you continue to enjoy the nice spring weather.

Take care,
Paul, Katie and Mitchell

Friday, April 20, 2007 7:09 PM CDT

It’s amazing how a little warm weather brightens your day. We hope everyone is finally enjoying the spring weather.

Mitchell absolutely LOVES the nice weather. As you can see by the picture, this is what he wants to do…ALL the time. Paul and I are getting better at not using the word “outside” in our vocabulary unless we have the time to go outside. Sunday we walked to the park. Mitchell walked the entire way there! (about 2 blocks) Then he played for about an hour. He did very well walking in the small rocks, not falling at all! Afterwards he rode the stroller home and his legs were jelly. We all had a great time though. Mitchell has started bringing our shoes and his jacket to us when he wants to go outside. He also goes to the door a lot. It really has been nice being able to get outside. Yesterday we went out in the back yard and Mitchell just loved running down the hill. I had his hand, but he really did well controlling himself so he wouldn’t fall. He ran all the way down to the cattails-drainage ditch…and was laughing all the way. We had a great time. I love staying home with Mitchell, but warm spring days when we can get out and play makes staying home that much better.

Mitchell has been doing very well with his signing lately. He still gets confused sometimes as far as which sign to us. I find this happens if we don’t respond to a sign right away. But, during his speech time today he knew what part of the body his hand needed to be, he just didn’t always have the exact sign down. (Partially due to fine motor skills)

I talked to Dr.Welle on Wednesday about the overnight EEG. He seemed to agree that 6 months was just ridiculous. He has decided to download Mitchell’s apnea monitor again and see how many episodes he has had in 3 months. The last time we downloaded it-we had waited 7 months and like he said, “the report was the size of the Texas phone book”. This made it really hard to grasp how severe the problem is. Hopefully downloading the last 3 months will give us a little clearer picture of what is going on. He agreed that it isn’t an emergency to figure this out but something that we need to really start looking into. He really thought that he would outgrow the issue by 2 and shortly he’ll be 2 ½ and is still having relatively the same amount of alarms as he was having two years ago.

We had a new nurse start this week. Trudy has trained in a few nights but had her first night alone this week. It went well and Mitchell behaved for her. She seemed to be very nervous but we prefer this because it shows that she understands what “could” happen. Nurses that come in overly confident scare me because they have the “it wont happen to me” attitude. She did a great job and Mitchell really seems to like her.
Mitchell had his first bbq rib meal tonight. He LOVED them! Not sure if it was the actual meat or just the bbq sauce. Whichever it was, he just ate them up!

Everything is going well here. We’re enjoying the nice weather by trying to get to the park or going for a walk every day. Like I said, Mitchell absolutely loves it.

Take care,
Paul, Katie and Mitchell

Wednesday, April 11, 2007 1:01 PM CDT

We hope everyone had a great Easter weekend. Despite the snowy weather, we had a great weekend.

Grandpa and Grandma came for the weekend. Once again they couldn’t believe how many new things Mitchell is doing. Nana and Papa came for the day on Monday and were in shock with how Mitchell was walking all around. It was a nice family weekend.

We met with the pediatric neurologist on Monday. The purpose was to start looking into Mitchell’s sleep apnea. I guess our first step is getting an official diagnosis of central sleep apnea. This is not very common so the neurologist was hesitant to say that this is what was going on. She recommended doing another EEG to rule out seizures. The EEG will be done throughout the night while Mitchell is sleeping. The hope is that we will catch one of Mitchell’s apnea episodes and hopefully we’ll be able to figure out if this is apnea or seizure activity. I think that this is a good start or biggest issue right now…the receptionist said that she probably wont be able to get Mitchell scheduled for this test until September/October. This is just absolutely unacceptable. I talked to Dr.Welle’s phone nurse today and was lucky enough to get my favorite nurse. (She calls Mitchell their VIP patient) She agreed that a 6-month wait for this EEG is just uncalled for and will talk to Dr.Welle. (who is out of town for a week) We are looking into getting this done within the next couple months. If this can’t be done we will be looking at taking Mitchell to the cities for his neurology appointments. We really have tried to stay within the Meritcare system and stay in town but it is really just not acceptable to have a 6 month wait on something like this. Now that I’ve been asking around, it sounds like many families in the area end up going down to the cities for neurology appointments.
Hopefully it will be something that we can just work on this spring and summer and then not have to have a lot of follow-up appointments. Right now it will all depend on when this EEG is scheduled for. Hopefully we’ll know by the end of next week or the following week.

As for Mitchell, I don’t know that we’ve bragged lately about all that he is doing. He continues to get stronger on his feet and is beginning to crawl up on furniture. He is also able to walk up the stair using the railings. He continues to work very hard at getting up in the middle of the room without using furniture. This seems to be very hard for him, but he is SO proud of himself when he gets it. He seems to be signing more but still gets confused from time to time with what sign to use. He knows that he has all of these “words” but sometimes just gets confused about when to use what words. The last couple of weeks Mitchell has been completely into reading book after book. He just loves books. He has books that he likes Dad to read and books that he likes Mom to read with him. Speaking of, Mitchell is starting to be quite the Daddy’s Boy. He just gets so excited when Dad comes home from school. I think that they will have a blast this summer.

Well, enough bragging for one day. I’ll let you know what we decide about the neurology appointments and testing. We have an appointment with Dr.Klava, the rehab doctor. He is the one that works with Mitchell’s braces. I’m guessing we’ll have to get a new set as he is starting to grow out of his old ones. I’m sure the appointment will go well, he is a great doctor.

Take care,
Paul, Katie and Mitchell

Friday, March 30, 2007 1:02 PM CDT

Well Mitchell is up to his old games when it comes to surgery. Mitchell started getting a fever on Wednesday. He also started getting his 2-year molars so I wasn’t too concerned about the fever. We thought that it would probably last a day or so and we’d be fine for today. Well, the last 2 days Mitchell has really just been very lazy and sensitive…again could be from the teeth. After talking to Dr.Welle twice yesterday he said see how he is and know we can always reschedule. I thought we’d wait until this morning and then make the call. Mitchell’s fever continued to go up and went up to 102…which seems high for being just teeth. So, we made the difficult decision just to cancel the surgery. Mitchell really needs to be feeling “normal” before we put him under anesthesia. I felt confident with our decision; even knowing that surly Mitchell’s temp would probably be normal this morning. Sure enough, 98.4 at 6:00 this morning. But, even with a normal temp, being he had been miserable the last 48 hours, we just couldn’t take a chance.

This morning I talked to Dr.Welle’s nurse and we decided that being it was Friday and being he had been running a temp for a couple of days that it would be a good idea to get him checked. Mitchell’s ears still looked good. Dr.Welle did a chest x-ray, which turned out looking good. We also did a urinalysis, which also came back normal. Lastly, we took another sputum sample, we wont that those results until Monday. He isn’t horribly ill, and everything still seems to point to his teeth, but Dr.Welle agreed that there was probably more to it than just his teeth. He seems a little more energetic today than he was the last couple of days so hopefully he is on the up side of whatever it is.

We’ll let you know how he is doing in a couple of days.

Have a nice weekend.
Paul, Katie and Mitchell

Monday, March 26, 2007 12:24 AM CDT

I meant to write last week but just didn’t get to it so I have lots to say today.

Mitchell had an appointment with Dr.Kantak last Monday. The appointment went well. We talked about when he wants to scope Mitchell again and he has decided that he will wait another year. We have been scoping him in the fall but will switch it to next spring/early summer. He feels that Mitchell just needs time to grow before getting the trach out. We also discussed the possible issues we may run into if the trach would come out. First being Mitchell’s nose-his cleft repair is excellent, but his nostril is still flattened a bit. The concern would be that he wouldn’t be able to get full use of that nostril. The next is the size of his airway—it seems that Mitchell’s larynx is smaller (the back of his throat). There is a possibility that he would/could have obstructive sleep apnea if the trach would come out. So, time is our best bet. It actually makes more sense to scope him in the spring as the only reason to scope is in hopes that the trachea is strong enough to get the trach out. Most ENTs don’t want to decannulate (take the trach out) in the fall or winter because of the high risk of illness as well as the dry air. So, scoping him in the spring really makes more sense. But, that means we have to wait another year to get a look at his airway. So, that is how that appointment went.

We also saw Dr.Welle last Tuesday for a “re-check” to make sure Mitchell’s infection was going away. And, we saw Dr.Welle again today for a pre-op.
Last week Dr.Welle was not impressed at all with how Mitchell looked and sounded. He said that if he had to decide that day he wouldn’t pass him for anesthesia. He put Mitchell on another antibiotic and 2 nebs a day. Today’s appointment went much better! He was very impressed with how Mitchell sounded. He thought Mitchell looked fine for the procedure on Friday. (Getting tubes put back in) During the procedure Mitchell will get the tubes put back in, the ENT will look at Mitchell’s trachea to see if there is any scar tissue they need to remove, and he will also have a hearing test. Lastly, to my surprise, Dr.Welle wants him to decide if we need a bigger trach for Mitchell. Mitchell is growing and being we know we have at least another year with the trach; he wants to make sure it is a good size for him. I’m hoping that it stays the same. He seems to be doing well with this trach-so I don’t see the need to upsize him. I guess we’ll see what they decide.

Mitchell has started to develop eczema. This is basically just means he has sensitive dry skin. He has always had somewhat sensitive skin, but never has had a rash due to it. Today we got a prescription that will hopefully help.

Other than the latest doctor appointments, Mitchell has been just his crazy ol’ self. He really is so energetic. It is great to see but extremely exhausting. The nice weather has been great. Yesterday Mitchell spent a lot of time on the deck running around and now that he has the “go ahead” health wise I think we are going to try and get out for walks and spend more time outside. Mitchell absolutely LOVES being outside and I see us spending the summer out playing. We’re very excited. Here are some pictures.

We’ll update sometime this weekend to let you know how the procedure went. It is really a very short procedure so hopefully we’ll be home Friday afternoon. However, I get nervous anytime he goes under anesthesia, so please keep him in your prayers.

Enjoy Spring!
Paul, Katie and Mitchell

Tuesday, March 13, 2007 5:36 PM CDT

It has been a long week...it's only Tuesday!

Mitchell has been very junky for about 1 1/2 weeks. I believe a week ago I was talking to my mom and said, "you know, he seems to be acting like he did when he had pneumonia" (Except his sats. have been better) We have been waiting for Mitchell to give us a little more before we bring him in. He has been acting very normal except for his junkiness. I was trying to give Mitchell the opportunity to fight this on his own without antibiotics and today finally brought him in. Of course Mitchell was the happiest kid in the walk-in waiting room. He was running around playing while all of the other kids sat with a pale sick look. We get into the room and he smiles and laughs while the nurse takes his temp...well he has a normal temp...lets get his oxygen saturation…99 percent! I grin and say, "Believe me, he acts fine now but he turns into a monster at night." She smiled. Dr.Welle is still doing shifts at the hospital so we saw someone who we had never seen before. This is always tough but actually went well today. (Meaning, he did everything I asked him to) I was very pleased that he didn't give me the typical, "he looks fine" comment because he really does “look fine”. The chest x-ray showed that Mitchell has his "walking pneumonia" again. He is on antibiotics and increased nebs. The doctor decided not to give him the steroids being Dr.Welle noted "very hyper on steroids" in his chart. I guess the doctor figured he was "hyper" enough as he was grabbing at the mouse as the doctor was trying to use the computer. I agreed that we'd wait and see what the antibiotics could do before giving him steroids. Mitchell is fine but we are canceling therapy for the week to try and get him healthy again. My biggest worry right now is why he has had pneumonia 2 times in 3 months. I’m sure we’ll talk about this at our next appointment. We also have an upcoming appointment with the pulmonologist.

Mitchell’s ENT appointment went well last week. He agreed with us on the tubes. They are supposed to be going back in on the 30th provided Mitchell is healthy enough to have the surgery. I’m hoping that we can have at least 1 week of being illness free before the surgery. (I’m guessing that is what Dr.Welle will want as well)

On the home front…there is a lot going on as well…
Paul and I are neck in neck with our Portfolio challenge. We are both in the top 30 percent. It seems like he is ahead one day and I am the next. Both of our portfolios took a beating after today’s market. (thank goodness it is just for fun)
My computer died on me and this time it really died. I lost everything that was on it. So, if I typically email you and haven’t, it is because I don’t have your address anymore. So please drop me a line so I can have your email. That was a BIG bummer this week. I lost about 5 months worth of photos as well. I think that was the BIGGEST bummer of the entire deal.

Needless to say, it hasn’t been the greatest week for us…and it is only Tuesday. But, we’re looking up it could be much worse. At least we have a happy sick kid who doesn’t seem to know he is sick. What a sport. We’ll let you know how our appointments go next week.

Have a great week,
Paul, Katie and Mitchell

Monday, March 5, 2007 7:11 AM CST

We hope everyone enjoyed the snowy weather this past week. Paul was home on both Thursday and Friday because of conferences that had been earlier in the week. It was nice to have him home an extra couple of days. We took turns shoveling out the driveway and taking naps. It was a very relaxing weekend. Mitchell got a chance to get outside for a bit and he really enjoyed the snow. Actually, he cried when I brought him in. I just can’t wait until spring and summer; I have a feeling we’ll be outside a lot!

Mitchell has a little cold now. I feel like he has been sick all winter, but I guess it has just been the typical childhood bugs. We have been fortunate that they haven’t hit him extremely hard. This weekend has been a little of a challenge as we haven’t had nursing care.

I’ve forgotten to write this-Mitchell has gone potty in his potty chair about 5 times now. He really isn’t ready but as long as he doesn’t mind it, we might as well keep putting him on it. He does walk to the bathroom when I say, “lets go potty.” So, that’s a start.

We have our ENT and audiology checkup this week. I’m hoping we’ll have an idea about when we can get the tubes back in…actually hoping that the ENT agrees that the tubes need to go back in. The audiologist will just be making new molds for Mitchell’s hearing aids. And if we can get the tubes in we’ll also discuss doing another ABR hearing test, which would be done at the same time. (Mitchell has to be under for that test) I’ll let you know what we find out.

Paul and I are starting a big contest today. We are both taking part in the CNBC stock portfolio challenge. Those who know me know that I really just don’t know the first thing about stocks but I think that is what is making Paul shake in his boots. I’ve learned a lot this weekend cramming for the big opening this morning. I told Paul he’d better watch out I might just become the next big day trader. Though we aren’t expecting to win any real money…it’s been fun talking stocks and taunting each other with our “secret stocks.” I’ve learned to keep my stocks a secret as I found one I really liked and mentioned it to Paul and now have noticed it is on HIS list!

We hope everyone has shoveled out of the big storm. Have a great week.

Take care,
Paul, Katie and Mitchell

Wednesday, February 21, 2007 9:07 PM CST

We really don’t have a lot to update on. It seems that Mitchell and I have come up with a little stomach flu. Nothing too exciting, Mitchell only vomited a couple of times and just seems to be laying low. In toddler terms this means that he is walking and not running around and that he will allow you to read him a few books at a time. I myself am just a little queasy.

School is going well for Mitchell. He really has made great progress. Mitchell seems to be watching more and certainly seems to be trying to communicate more.

Grandpa Dave and Grandma Deb came up for the weekend. Mitchell showed them how busy he is. He really is at a fun age. Here are a few pictures. I myself am getting bad at taking pictures…I’m going to have to get back at it.

Take care,
Paul, Katie and Mitchell

Wednesday, February 14, 2007 9:15 PM CST

Happy Valentines Day!

We have a lot of updates this week. Mitchell has been bogged down with an ear infection. Of course this all came about the week that Dr.Welle isn’t taking patients because he is the hospital peds dr. So, we ended up going into the walk-in clinic. Luckily we didn’t have to wait very long. Mitchell ended up on antibiotics as well as eardrops. It really didn’t seem like it was getting better because he ended up with nightly fevers this week. We had already planned on seeing Dr.Welle today for a ear follow up appointment. Thankfully we had this appointment pre-booked because it is nearly IMPOSSIBLE to get in this week. The nurse said that the walk-in clinic had a 2-hour wait all weekend! They have been calling in nurses and back-up doctors.

We actually had a pretty good appointment today. Mitchell’s right ear seems to be on the mend. We have a couple days left of meds and then hopefully he’ll be good to go. He still has fluid in his left ear but it isn’t infected.

I had 2 things to talk to Dr.Welle about during this appointment. The first being Mitchell’s left ear. The tube has been out for 4 or 5 months and I think Mitchell has had fluid in this ear for about half of the time. This is very disturbing because even though it isn’t infected, the fluid can cause his hearing loss to be worse than it already is. I laid in bed reciting my pros and cons list of why we feel that tube needs to go back in. (ultimately meaning another surgery) I wanted to come in prepared because I know that both Dr.Welle and Dr.Nagle (the ENT) are tough to convince when it comes to a second set of tubes. The minute Dr.Welle looked in Mitchell’s ear he said, “Mitchell, your tube is out and you still have fluid in your ear…you need that tube back in.” I almost felt like saying “HEY-I stayed up tossing and turning for that? You don’t even want to hear my argument?!” I smiled and said, “I agree, we are starting to notice a difference in his hearing.” Dr.Welle said that we’d need to make an appointment with Dr.Nagle and discuss it with him. (1 down, 1 to go) This isn’t something that we have to get done as soon as possible. It is just something that is in the working. We’ll see what Mitchell’s ENT says about it. We’ll let you know when the appointment is.

The next thing we needed to talk about was Mitchell’s sleep apnea. He continues to have alarms weekly. During an apnea episode Mitchell stops breathing for 5-35 seconds. The alarm goes off after 20 seconds. He always seems to respond and starts breathing again on his own without us having to do anything. We had the memory read off of his alarm and it showed that he had over 200 episodes. The toughest thing about his sleep apnea is that it is central meaning that it is something that is going on in his head vs. obstructive, which means something is obstructing his airway. Dr. Welle still feels that Mitchell will outgrow this but agreed that it wouldn’t be a bad idea to have someone take a look at him being he should’ve outgrown it by now. We have an appointment for the pediatric neurologist in April. Of course we’ll keep you updated with that as well.

Now that the medical stuff is out of the way…Mitchell’s schooling is going very well. He seems to be making progress with his therapy and still enjoying it. We’ve had to take a couple days off this week because of his ear infection but will get back to it next week.
Mitchell is trying to talk more than ever and starting to become more interested in signs. His new sign is “book” and loves to read! He really is so much fun to be around right now. Though he does test Mom and Dad from time to time. I think he has a magnet that attracts him to things he isn’t suppose to get in to. And if you say, “no”…that means it is just that much better. He has certainly shown that he is a typical 2 year old.

We hope you had a Happy Valentine’s Day.
Take care,
Paul, Katie and Mitchell

Monday, January 29, 2007 9:59 PM CST

We had a great weekend. Paul’s sister KT and her boyfriend Jeff came to visit us. They also surprised us with Paul’s brother Joe who has been in New Zealand. He was a very nice surprise. We saw Joe last year at Christmas and he was amazed at the changes in Mitchell. They all had a great time playing with Mitchell and I think he really enjoyed the extra attention. We were able to have a long nursing shift on Saturday so we went out for supper. It was really nice to “catch up”. We had a lot of laughs.

Mitchell started his “intense therapy” today at school. He did terrific and really seemed to like it. The 15 minutes soon turned to 30 minutes with no sign of stress. After he was finished, he was able to play a little in the room. He really did a great job. The point of the therapy is to get Mitchell to imitate what the teacher is doing. He started to imitate without prompts after about 15 minutes. This is exactly what we were hoping for so we hope that he continues to do well the rest of the week.

Mitchell has also started to sign “puppy”. He’ll also sign “kitty” if you ask and then give his hand a slight movement to his face. He really seems to be taking off with communication lately and it is really exciting. We are going to add more pictures to his PECS board. This is a system in which he chooses what he wants and then brings the card over to us. We have many different pictures but usually only two or three out at a time. He also seems to be saying a number of words but they are very sporadic. If you aren’t paying attention, you may miss them.

We went over to Eric and Jenny’s place last night. Their son Max is Mitchell’s age. We try and get them together every now and then. Mitchell is really walking around well so it was really fun to see them being able to actually interact. Typically Max was so into moving around and Mitchell was too, but he was only able to crawl which made it hard for them to “play”. Eric and Jenny just had another baby almost a week ago. Paul, Eric and the boys played while Jenny and I talked about the baby. Of course I got to hold little Charlie. Boy, you forget how little those guys are when they are born. Mitchell was very nice to Charlie, he tried to pat his tummy and then touch his face. He also liked to bring him some of Max’s toys to share. We all had a lot of fun.

I’ll try and get pictures up as soon as I can.
Take care,
Paul, Katie and Mitchell

Sunday, January 21, 2007 2:46 PM CST

Hello! We have lots to type about….

Mitchell had his abdominal ultrasound on Wednesday. He really did well during the ultra sound. The lady doing it said that he was one of her better patients-usually kids try and get up and get away. Mitchell wasn’t too happy about it but after awhile he just decided to lie nicely and get it over with. They checked all of his organs in his abdominal. We were mainly looking at the kidneys but Dr.Welle just wanted to be certain so they looked at it all. The ultra sound looked “perfect”. Everything looked great; kidneys were perfect shape and size. This is what we were expecting to hear, but any test given to Mitchell makes me nervous as things have been going so well lately. Of course Dr.Welle is always great about calling as soon as he hears the results so we don’t have to wait.

Mitchell also had his hearing tested on Friday and did very well. They are unable to test each ear individually because he is just to little for that. However, they do test his overall hearing first without his hearing aids and then with them. He showed a moderate hearing loss with his hearing aids. This is not surprising as it is consistent with what we have gotten in the past. With Mitchell’s hearing aids in he tested in the normal range. He did just a tad better than he did last time. Mitchell did a great job with his hearing test. We were reassured that with his hearing aids Mitchell is able to hear all of the speech sounds. When Mitchell did not have his hearing aids in, he was able to respond to the sound, he was just a lot slower to respond and she had to repeat the sound a couple of times.

We also had Mitchell’s IFSP meeting this week. This is the plan that the school sets up for Mitchell. It has goals on it for Mitchell for the next year. Mitchell’s teachers came over and talked about the amazing progress he has made. It really is amazing when we sat back and really thought about where we were a year ago. We have one amazing son. A few of our hopes and goals for Mitchell in the next year are: improving communication, getting to the standing position in the middle of the room and using a spoon, fork and cup. Oh-and our big one: to be able to express frustration without hitting, biting or throwing blocks. This is something that is increasing as he is getting older and we feel it is due to the lack of communication skills. The meeting went really well. We’ll be starting an intense therapy session in a week or so. This session will focus on imitating others. Mitchell does not do this very well and it really is a crucial part of learning. The hope is that this will help him across the board-communication and fine motor wise. He will have a 15-20 minute session everyday for 5 days a week. This will take place at the school in a small room that has very little for distractions. Up until now we have been pretty adamant about Mitchell only having one therapy session a day. But, because of the short period of time that this therapy will be, we feel that he will be able to handle it. We’ll be watching him for signs of stress and if this is the case we’ll have to cut back. We are looking at doing this for about a month or until he masters “imitation”.

As far as moving around-Mitchell is walking the majority of the time. You can see daily progress with his “squatting” skills as we work on him trying to pick up toys without holding onto anything for balance. He really is doing a nice job and he works so hard at practicing.

I think that this next week things will slow down a bit. We have had so many appointments and a lot of things going on. It is nice to be able to be busy once in awhile, but I’m ready to get to our regular routine without appointments.

We hope everything is going well for all of you.

Take care,
Paul, Katie and Mitchell

Wednesday, January 10, 2007 9:47 PM CST

Mitchell had his 2-year check up and it went very well. Of course we had our typical “he sure isn’t a heavy weight is he.” Mitchell came in at 18 percent for weight and 45 percent for height. We will continue to push food and his formula to try and get him to gain weight but with him moving around so much, this is getting more and more difficult.
We discussed where Mitchell is developmentally. Dr.Welle seemed to be pleased with what he is doing. He seems to be improving steadily in all areas-which is very encouraging. We both got a good laugh at Mitchell’s “best fine motor skill” which is sticking his pointer finger in his trach hole when I go to suction him. Well, his teachers have been telling us that we need to work on poking…I guess there you go. Now we don’t promote this, but I had to get a picture because it was just too cute. (Note: now we are ignoring the behavior though Mitchell thinks it is quite funny) Notice that in the picture his shirt says, “I tried to be good but I got bored.” Mitchell has also decided that walking is the way to go. He still crawls when it is convenient, but is walking most of the day. We are now working on him getting to the standing position from the middle of a room.

We discussed Mitchell’s eyes, ears and everything else you can imagine. Dr.Welle certainly spends enough time with us. Once again we discussed Mitchell’s kidneys. He has never had kidney problems and when born the kidney ultrasound looked good. However, we have been told that kidney tumors are a possibility in children with trisomy. Upon further research and talking with many trisomy 13 parents it seems like they are much more prevalent in trisomy 18 than 13. Many of the parents still get a routine ultrasound once a year. I guess it is highly recommended every 6 months for trisomy 18 children. Because of Mitchell’s “mosaic” diagnosis, the geneticist has told Dr.Welle not to treat Mitchell as a trisomy child because he is not completely affected. Dr.Welle and I talked about what other “mosaics” do as far as testing and it seems like all of the others are still treated just as severe as the “full trisomys”. Because of this (and I’m sure because we ask about it every time we are in) he has agreed that an abdominal ultrasound isn’t such a bad idea. There is nothing that is encouraging us to get this done, it is just pre-cautionary. Like I told Dr.Welle, I guess I’d rather have it done and be overly cautious than wait and wish we would’ve done it. He agreed. Overall, Dr.Welle thought Mitchell looked great.

Paul, Mitchell and I had a nice family outing last Friday. Mitchell went to his first Spuds basketball game. He was a little scared at first with all of the people and noise, but he really enjoyed it. We had to take his hearing aids out so that it wasn’t as loud, and then he loved looking at all of the people. He also loved all of the attention he got.

Our new year is finally calming down a bit and I think we are getting back to “normal”. Mitchell ended up having the stomach flu for a few days. This really knocked him out. One day I think he was only awake about 3 hours out of the entire day. He just laid where ever he could, the floor, bed, Mom or Dad’s lap…where ever he could put his head down, he did. Luckily he was still very cooperative as far as drinking so we were not too concerned about him getting dehydrated. Unfortunately I ended up getting the bug as well but it wasn’t that bad and only lasted for about 24 hours. I then ended up having some pretty severe neck and back problems. Needless to say, Paul’s last couple days of break were spent taking care of Mitchell and myself. He was the lucky one that ended up staying healthy through it all. That first week of 2007 I was wishing we could go back to 2006 though now we are all back to being our healthy selves.

Take Care,
Paul, Katie and Mitchell

Sunday, December 31, 2006 8:48 PM CST

Happy New Year!! I meant to post earlier, but with the holidays-we have been pretty busy. Needless to say, Paul is ringing in the new year watching season 3 of "24", I will be ringing it in watching the back of my eyelids while having a slumber party with Mitchell and Mitchell, he will be doing what I’m doing (hopefully). Unfortunately Mitchell and I are sick. I have a horrible cold and we haven’t figured out what is going on with Mitchell. It seems like he has a small cold but has started to spit up and is having runny diapers. I’m hoping that it is just a cold and that it isn’t going to turn into anything crazy.

We had a terrific Christmas. Grandpa and Grandma (my mom and dad) came up for the weekend. We went to Church on Christmas Eve and Mitchell did very well (for a 2 year old). He did a lot of laughing and ate a lot of crackers. We also had our traditional prime rib-which was wonderful. And of course opened gifts. We had a great time. Mitchell had a fun time playing with Grandpa and Grandma.

Nana and Papa came Christmas Day for Christmas. We had some great tasting chicken and also had the traditional gift opening. We had a very nice time. We were also able to go out for supper Tuesday since we had nursing care. Mitchell had a great time playing with Nana and Papa and showing them all of his new tricks.

Now for the New Year: I hesitate as I type this (especially since Mitchell hasn’t been feeling well) but at midnight we can officially say that Mitchell had NO hospital stays in 2006. This is something to be very proud of. He is such a strong kid and has done so well. We expect bumps in the road with Mitchell and I think that this is why it is such a great achievement. Mitchell has obtained many achievements this year. We will be having his school meeting coming up but I know that they actually had to add goals because he kept achieving the ones written. He is speaking more, walking now and even being very mischievous. Though at times this gets frustrating, I can’t help but think it is a great thing because it shows that he “gets it”. Things seem to be clicking a little more for Mitchell. He absolutely loves music and we find it amazing that he can identify 1 song out of 14 by just a couple of beginning notes. He never stops trying and this is what I love most about Mitchell. He truly is the most motivated little boy I know. He really is an inspiration.

We hope that your 2006 was full of achievement as well as no hospital stays. We wish you best in 2007!

Happy New Year!
Paul, Katie and Mitchell

Saturday, December 23, 2006 9:11 PM CST

Mitchell's eye doctor appointment went okay on Wednesday. To make a long story short, we'll wait until this summer and take him back in. At that time he may possibly get glasses but it will depend on if his eyes start to cross more often. At this time it really isn't that bad so we are able to wait.

We also took Mitchell to the internal medicine doctor. He is the one who is in "control" of Mitchell's braces on his legs. He thought that MItchell's walking looked good. He toes in once in awhile but he hopes that he will outgrow this. We also talked about how he sits. (this is what I'm most concerned about) Mitchell's legs are very tight-he suggested stretching and encouraging him to site cross legged. We will go back in 4 months for another check up.

Grandpa and Grandma are here for Christmas. Tomorrow we will be opening gifts, going to candle light service at church and then we'll have our traditional prime rib dinner. It is hard to believe that it is Christmas when it was 42 degrees out today! It looks like I will have my first "brown" Christmas.

Grandma changed Mitchell's trach for the first time on Friday and did very well. I think she was very nervous, but she did a great job. (if she hadn't been nervous I would've been concerned...I still get nervous and I've changed it many many times) She said that it was easier than she had thought it was going to be.

Nana and Papa will come for a few days on Monday to help us celebrate Christmas! We are excited for another great meal and celebration!

My computer is in getting fixed-so unfortunately I cannot post any new pictures until probably Tuesday or Wednesday. But, no need to worry-we'll get them up as soon as I can. I'm sure we'll get lots of great pictures.

Merry Christmas!
Paul, Katie and Mitchell

Sunday, December 17, 2006 8:35 PM CST

I had a great Birthday weekend. On Saturday Mom took me to the to see this Santa Claus guy Mom and Dad have been telling me about. Santa was really nice! I heard a Grandpa behind us telling his Grandson not to be scared so I thought I’d show him how to do it. (I could see that Grandpa and Grandma were a little nervous too) Mom put me on his lap, and I smiled for this crazy guy that was making funny sounds and taking pictures. Then Santa showed me that he has hearing aids just like me! Before I got down I had to do the “beard test” Dad had told me about. Yep, he was really Santa. Mom said that the photographer got a picture of me testing to see if the beard was real! Santa didn’t mind me pulling his beard. Then he gave me a candy cane. Grandpa and Grandma were so proud of me for not being scared!

After lunch and my nap, I got to open my Birthday presents! I had so many to open, Mom had to help me with some of them. I think that Mom, Dad, Grandpa and Grandma had just as much fun playing with my new toys as I did. I really liked the ball toy that shot balls up in the air! Then Dad ordered pizza (mmm, my favorite)! I even got to eat off of a special plate! Grandma held my Elmo cake up so Mom could take a picture…it looked so good. Next thing I knew I looked up and everyone was looking at me and singing a song! I didn’t really know what they were doing, but I guess that is what those grown-ups do at Birthdays….it made me laugh. Oh, the cake and ice cream was so good! I was so full (and messy). Mom let me take a bath and play with my new dolphin bath toys! I had a great time but was very tired and was ready for bed. I fell to sleep right away. What a great day! I had a lot of fun! Mom and Dad said that I better get a lot of rest this week because this weekend is Christmas and we are having Grandpa and Grandma come over as well as my Nana and Papa. I can’t wait!! They are so much fun to play with! I hope you like the pictures Mom put up. She said that she couldn’t put my Santa pictures up because someone else took them and you aren’t suppose to. I was upset because I really wanted you to see how good I was. Oh-well. Mom told me to write that she might try and update towards the end of the week. I have an eye doctor appointment on Wednesday.
Have a nice week and thank you for all of the Happy Birthday wishes.

Your 2-year old friend,
Mitchell (oh and Mom and Dad)

Friday, December 15, 2006 8:10 AM CST

We went to see Dr.Welle yesterday and Mitchell sounds good but not perfect. He will be on another week of the steroid and then he should be good to go. He did not feel that he needed a chest x-ray at this time. (yeehaa….Mitchell dodged the “bullet”) We will go in for his 2 year check up after the first of the year and that is when he’ll also have his “re-check” for the pneumonia.

Tomorrow is a big day for our little guy. Mitchell’s 2nd Birthday! Obviously this is a very special day for all of us. We decided to not have a big party this year, but to have just a family party. Grandpa and Grandma will be coming today. We have lots of plans for the weekend including eating some Elmo cake, Pizza, going around and looking at Christmas lights and going to see Santa, Mrs. Claus and their 2 baby reindeer. It should be a fun weekend. We’ll be sure to take lots of pictures!

The little boy that I had written about had his trach surgery on Monday and did well. I haven’t heard anything since Wednesday but am praying that he continues to do well. Please continue to say a prayer for this little guy (Amos) and his family.

Take Care,
Paul, Katie and Mitchell

Saturday, December 9, 2006 8:31 PM CST

I wasn't going to update until later in the week-but felt that I really needed to ask a favor of you. (knowing that many will check the site Monday morning)

Recently I was in contact with a mother who has a son with trisomy 18. This family is from Nebraska-they are really having a tough time with hospitals. I know that I've mentioned it on the site before--but many hospitals will not provide all of the services a "non-trisomy" child would get. I was very hurt by this mother's "story" and what she has been through. If I shared the entire story, you would be reading all day, it is really very sad and I'm so saddened that a hospital(s) would put a family through this. They have 6 children at home so the husband is staying home with them while the mother is bouncing from state to state trying to find a hospital that will provide the necessary treatment so this child can go home somewhat safely.

Thankfully Minneapolis Childrens took this baby on. The reason we were contacted was because the family had to decide if they wanted their son (Amos) to get a tracheostomy. It was nice talking to her and at that time she was leaning towards the trach but wasn't certain what to expect. She said that she has given the go ahead to do the surgery but they said that she can change her mind at any time-until he is actually in surgery. Surgery is set for Monday morning.

I guess all I ask is that you say a prayer for this family. They have come so far and yet have so many hurdles yet to jump. Please pray for baby Amos and his family in the next couple of days as well as the doctors and nurses that will be working with him.

Side Note: Mitchell is still doing well. I think he is pretty much back to his normal self. I however have seemed to catch this cold he had-hopefully it wont stay around very long-it is hard for Mitchell to understand why Mom is laying on the couch all day and not wanting to play...good thing it is the weekend and dad is around!

Take care,
Paul, Katie and Mitchell

Thursday, December 7, 2006 8:59 PM CST

Mitchell is doing well. We wont know if his pneumonia is “officially” gone until Thursday. We’ll go in for a chest x-ray and visit with Dr.Welle. He really seems to be feeling better though. He has gone 2 nights without oxygen and he was off of it during his nap today. This is a sure sign that he is well on his way to being “pneumonia free”.

We started back up with therapy this week though we opted to do only “in home” therapy. We are waiting until we know the pneumonia is officially before we take Mitchell out and about again. He has been able to stay out of the hospital with this pneumonia with deserves a big applause on his behalf. He is getting so strong; it really is fun and reliving to see. Though on the flip side-it is a bit scary how quickly he went from just getting over a cold to pneumonia in both lungs. He is always keeping us on our toes.

Our next goal is to pack on some more weight. Mitchell has lost some with his illness. He was 25 pounds and is 23.5 pounds now. Before pneumonia Dr.Welle had a goal of 27 pounds by his 2-year check up. (sorry…not going to happen) The last couple of days he has been eating and drinking a lot so we are well on our way.

December brings a lot of appointments. We’ll do our follow-up appointment with Dr.Welle next week. Next we have an eye doctor appointment as well as a visit with the internal medicine doctor. We are expecting a very busy December with appointments, Mitchell’s 2nd Birthday and Christmas!! A lot of exciting things!! Take care, I’m not sure when the next update will be-but will certainly have one up after his appointment with Dr.Welle.

Take care,
Paul, Katie and Mitchell

Friday, December 1, 2006 9:42 PM CST

As of today, we believe that Mitchell has had his worse nights as far as the pneumonia goes. (I’m knocking on wood) Last night he woke up a couple of times because he was thirsty but as far as medically-he had a pretty decent night. He still needed oxygen to get through the night-but his saturations were a bit higher on 1 liter than they were the night before.

We saw Dr.Welle today and he verified that it is viral pneumonia. He is impressed with how well Mitchell has handled it. He also got a good laugh at how Mitchell handled the steroid shot and the extra nebs. You see….both of these medications cause jitteriness and actually that is an understatement. This afternoon I found myself calling Mitchell “Taz” for the Tasmanian devil. He was absolutely crazy. Now Mitchell is typically very active, but today….but active wasn’t the word for it. I myself feel like I have sugar going through my veins just from being around him. Don’t get me wrong, it was nice to see that he wasn’t held down very long from this pneumonia, but I’m not certain how long I’ll be able to go at this speed. I tried to put him to bed for 1 ½ hours tonight, finally I called for reinforcement and Paul came and finished the job. Poor little guy, he was just too wired. AND-I didn’t even start the new steroid that he is to get now. I figured I’d start that in the morning so I can see how he reacts to it before getting it at night. What else did Dr.Welle say? Well, not much. He thought that he looked good but his lungs still sounded pretty full. So, we’ll start a new steroid neb tomorrow, continue with the antibiotics and continue with the xopenex nebs. We will need to have a follow-up visit in a week along with another x-ray. Dr.Welle is at the hospital next week, so we’ll have to wait until the following week to get the appointment. He didn’t think this would be a problem. And of course, we’ll go in if we see that he needs more oxygen support at night.

We are so lucky to have such a great pediatrician for Mitchell. Dr. Welle saw us yesterday, called us last night to make sure he was doing ok and then wanted to see him again today. He really knows when to give the support and knows when we have everything under control. Actually it was kind of funny, last night I was just thinking of a couple of questions I had for him and being it was 6:00 figured I’d have to wait until morning. Well, I guess maybe we were thinking the same thing because a couple of minutes after I was making a mental note of my questions, he called. What a great doctor. We are all very fortunate.

As I type, Mitchell is resting soundly. His heart rate is back to where it should be and he is only on .5 liters of oxygen. He may need to be bumped up later in the night, but .5 is a good start. We had to start at 1 liter yesterday so we are improving.

I probably wont get a chance to update until into the week. We’ll let you know how Mitchell’s weekend went. We will have nursing care for a couple of nights, so it’ll be nice to get some much-needed sleep.

Take care,
Paul, Katie and Mitchell

Thursday, November 30, 2006 9:43 PM CST

Well, we are about 16 days short of making it 2 years without any major respiratory illness. Unfortunately we have to say Mitchell has his first case of pneumonia. We had brought him in for an ear infection on Monday and Dr.Welle had said to check back in with him on Wednesday if we see little to no improvement. By Wednesday, Mitchell seemed to have cleared the ear infection, but was really needing oxygen support while sleeping. I talked to Dr.Welle and we both agreed that I’d watch him Wednesday night and bring him in Thursday being Wednesday night would be 48 hours after being on antibiotics. Mitchell did fairly well during the night but still needed a liter of oxygen and his saturations were only 93…97 is typical for him and that is without oxygen.

We saw Dr.Welle and poor Mitchell had everything under the sun done to him today. It has been awhile since we’ve had all these tests done and he was not happy about it. First we had a sputum sample taken (not very invasive, just suctioning him), and then it was off to get an x-ray. Well, typically they have let him just lie on the table and have me hold him…not today. Mitchell had to get in “the bullet” (my name for it). It is a clear capsule that comes completely around him tightly while his arms are straight up in the air. I cringe every time he has to be in this thing because I can’t see his face and at times can’t hear him breathe. He was VERY upset, but did well. His x-ray showed a lot of pneumonia, “there’s a lot of it and it's all over” are Dr.Welle's exact words. With that diagnosis came a blood test, this was taken from his arm. Now we all know how hard it is to get an IV into Mitchell and so I wished her good luck. It took a little “digging” around, which Mitchell again was not too fond of but managed. I was very impressed with our little guy. He was very very upset with all of this and throughout it, continued to breathe. I find this amazing because of the condition of his lungs at this time.

The last thing was to figure out what to do with Mitchell. As Mitchell sat on my lap, Dr.Welle had a very puzzled look on his face. I could tell he was trying to decide if he was going to admit him in the hospital or if he was well enough to send him home. Being Mitchell is still wanting to play and able to keep his saturations up during the waking hours, we were able to take Mitchell home. He is on xopenex neb every 6 hours (this opens up the bronchs) and we’ll do CPT on his chest 6 times a day. (this is when you pound on his chest to loosen the “junk” up) He was also put on another antibiotic, so now he is on 2.

So, Mitchell is a pretty sick little guy, though nobody told him that. He still wants to play and walk around. He isn’t as smiley as he typically is, but you can still make him laugh. I think that this is what has surprised us most. Now when those eyes shut…that is a different story. He is waking up at night crying and really has a tough time with keeping is oxygen saturations up. He’s holding his own though…lets hope mom and dad can too these next couple of nights. (of course these 2 nights are our nights witout nursing care-figures)

We'll bring Mitchell in again tomorrow afternoon. Dr.Welle wants to see him before the weekend. We'll try and get a quick update either tomorrow night or Saturday.

Please say a little prayer for Mitchell; that he stays strong and that this soon will pass.

Thank you
Paul, Katie and Mitchell

Wednesday, November 29, 2006 8:15 AM CST

It has been hard to get to this computer to update as we have been keeping very busy with Mitchell. We hope that everyone had a great Thanksgiving.

We decided to make the trip to the cabin for a couple of nights. We had a lot of fun visiting with all of the cousins, aunts and uncles and Nana and Papa. Unfortunately we didn’t get to see everyone we had hoped, but it is hard when we only have a day or two and are on a toddler schedule. We enjoyed a great Thanksgiving meal and basically just relaxing. It was nice to visit with everyone. Mitchell had a great time seeing everyone as well as playing with cousins Kylie and Derek.

We came back home on Saturday and Mitchell has had a tough couple of days back here in Moorhead. He has had a cold for about a week before Thanksgiving, but thought it was almost over when we went to the cabin. Unfortunately, it has turned into a double ear infection and his cold isn’t letting up. We saw Dr.Welle yesterday and he put him on some antibiotics for the ear infection. He said that if he isn’t better by Wednesday or Thursday morning, to bring him in again. During the day he still seems pretty normal though he is coughing a lot and maybe a little more tired. (but he wont take a longer nap) This evening was the first time that he really acted like it had knocked him down. Mitchell just sat in my lap while we watched T.V. Those that have met Mitchell know that he doesn’t sit for more than a couple of seconds so I know he just isn’t feeling up to par. Tonight he is needing a liter of oxygen to keep his saturations up which is on the higher side for him. I’m hoping that by tomorrow night the antibiotics will kick in and he’ll be having better nights. We’ll let you know. I will probably call and give Dr.Welle an update but wait to see how his night goes on Wednesday before deciding to bring him in again.

It is hard to believe that Thanksgiving is over and now it is time to think about Christmas. Paul and I put up some of our lights this last weekend and will get our tree and the rest of our Christmas decorations up this weekend. Mitchell is enjoying the lights and also really enjoying a little people nativity set he got from his Godparents. He really loves pushing the angel so the music plays. We went through the meaning of Christmas as we set it up, a new tradition that we’ll have every year. This year Mitchell is just a little young but we’re hoping next year he’ll do more than chew on Mary.

With Thanksgiving fresh in our thoughts, we’d like to once again thank all of our friends and family for the wonderful support we’ve gotten the last couple of years. We have come a long ways and we have so much to be thankful for.

Take care,
Paul, Katie and Mitchell

Monday, November 20, 2006 2:20 PM CST

Wow, it has been awhile. Boy are these weeks just flying by! I can't believe it is already Thanksgiving week!

Mitchell is doing well, he does have a cold right now but seems to be holding his own. He continues to make weekly strides when it comes to walking and talking. He is still hard to understand, but is really trying to say a few words. Speaking is going to take a lot of work, but he is definitely motivated to do so. Once in awhile he will try to say what we are saying. He usually says a lot of “ah”s with the correct syllables and inflections. (which is a good start) He really has a tough time getting the different sounds out but he gets a few. Lately he has been verbalizing more often, though he still seems to by “shy” around anyone other than mom and dad but after he warms up, he starts back up. A couple words he has been consistent with: “a-er” for cracker is coming out more often as well as “had/t” for hat. He even said “walk” for grandma when she was up. Mitchell likes to surprise you with his words, he will say something quickly and you’ll say, “what did you just say?” He looks up at you like, “well, if you didn’t hear it the first time, tough.” I have learned to always have my ears open because you never know when he is going to attempt to say a word. We are still working on signing and I believe he has started to sparingly use the sign “cracker”. We will continue to sign in hopes that he will pick up some more words this way as well.

Mitchell’s walking is coming along nicely. He is becoming more and more brave when walking around the living room and now even the kitchen. Mitchell’s physical therapist said today that he thinks we can officially say, “Mitchell is walking!” Yes he has been taking steps for a while now but in Mitchell’s PTs terms walking means, “being able to take controlled steps, being able to switch directions and also being able to start and stop.” Mitchell can do this pretty well. He still is unstable, but hey-they don’t call him a “toddler” for nothing, right?

Sorry, no new pictures. I guess with all of this walking, there is no time for snapping pictures. I’ll have to ask Grandma to send me some; I think she took some last time she was up. I’m sure we’ll take some at Thanksgiving…so stay tuned-we’ll get some on by next Monday.

We hope everyone has a great Thanksgiving. We try and remember daily how thankful we are, but it is always nice to have that day to send out a special “thanks” for what we are so blessed to have.

Happy Thanksgiving,
Paul, Katie and Mitchell

Tuesday, October 31, 2006 9:30 PM CST

As you can see, Mitchell decided to stick with the super hero theme again this year. We had a fun time trick-or-treating. We showed off our little Superman around our cul-de-sac as well as visiting a few friends around town. Mitchell really had a great time visiting, but had a tough time making it around the cul-de-sac as it was way past his bedtime. All three of us had a really great time. We hope you had a Happy Halloween as well.

Happy Halloween,
Paul, Katie and Mitchell

Tuesday, October 31, 2006 8:00 AM CST

HAPPY HALLOWEEN!

Wednesday, October 25, 2006 8:31 AM CDT

Well Halloween is just around the corner. Mitchell and I went out and got his costume yesterday. He was adamant about the one he picked. I gave him many choices and each time he picked the same one. I am going to make you wait until Halloween…so check back and we’ll have pictures.

There isn’t a lot new as I just updated you recently. I mainly wanted to share with you a video montage that I made of Mitchell. Many of you have visited the Living with Trisomy 13 website. This site was set up right around the time Mitchell was born. I think at the time there were only like 20 kids on the site, now there are 55! This site was the beginning of me being able to come to terms with Mitchell’s diagnosis. For me it brought both reality and hope together. I believe that if I share as much as I can about Mitchell, it will do the same for another family. The lady who started the website talked to one family that after looking at the site, had hope. This hope was shattered from their doctor. When questioned about the children thriving with this syndrome on the site, the doctor stated that anyone could look good in a photo. Because of this statement, they are trying to get actual videos of these children thriving and living life to the fullest. This really makes me so thankful for what our doctors have done for Mitchell. They have never once looked at his diagnosis and said his life is not worth saving because of it. I just pray that through this video other doctors will see that these children can make a difference in life and instead of shattering hopes of families they allow them to have their hope.

If you go to www.livingwithtrisomy13.org website, you can either go to the top and click on videos & presentations and click on Mitchell’s name or you can click on “Children living with trisomy 13” and then go down to Mitchell’s picture and click more information. If you have a slower internet connection, you might want to find a place with a faster connection to watch the video. We have a cable modem and I still have to wait forever. You will push play and then the video will start and stop as it is loading. I guess what I did was just pushed play and then went and did something else until it had played through once and then when I came back and played it again, it was fully loaded and therefore didn’t stop in the middle. There is music and Mitchell talking as well, so make sure your volume is up. I hope you enjoy it. Check out the other videos. Mitchell’s is the first of the living children with trisomy 13, but I believe there are more that are making them and hopefully they will be on there soon. There are also very touching videos of those who did not make it.

Whew, that ended up being longer than I had expected. Check back on Halloween. I’m going to try and get new pictures on hopefully that night. Have a Happy Halloween.

Take care,
Paul, Katie and Mitchell

Sunday, October 22, 2006 8:05 PM CDT

Sorry, it has been way too long since my last entry. I was meaning to get one on right after our appointment with Dr.Welle. Oh, well.

Things are going well here. Mitchell ended up with a pretty nasty infection after his bronch. He is actually just finishing up on his 2nd round of antibiotics and is feeling back to normal. We saw Dr.Welle on the 13th and that went well. Mitchell was sick, but not too bad, so he still got his flu shot. Dr.Welle and I discussed the results from the bronch. He was disappointed in that he thought there would be more improvement but still believes that it will get stronger. This means that he still believes that the trach will come out, it may just take an extra year or two. So, the plan is to continue on with the 4.0 trach and we will not downsize. We will continue the CPAP at night and continue to try and get him to tolerate the speaking valve. He agreed with Dr.Storm-that Mitchell looks so much better than he did a year ago, which is why he was surprised at the bronch results. He was pleased to tell me that the lipid test came back negative. This is great news! This was a little biopsy they did while doing the bronch. If someone is aspirating, they will begin to have fat in their lungs. So, this test basically was to let us know if Mitchell is aspirating. We really haven’t worried too much about this, but it is always a good thing to check. We were happy to hear that there are no signs of aspirating.

Paul has had this past week off due to comp. days and MEA. It has been really nice for both of us. I really enjoy having “me” days every now and then. It really seems to “re-energize” me. And, Paul really enjoys the Mitchell time. Football has been tough; he doesn’t see Mitchell very much being it is almost bedtime when he gets home from practice. So, they both really enjoyed the week together. The Spuds start playoffs on Tuesday. Go Spuds!

This week, back to therapy and school. We’ll celebrate Paul’s birthday tomorrow!

Take care,
Paul, Katie and Mitchell

Saturday, October 7, 2006 2:04 PM CDT

We ended up getting good and bad news yesterday. Before we go into what exactly they found, I will explain a little bit what they were looking at and for. Mitchell’s technical diagnosis is tracheobronchiolaryngo malacia. (say that 3 times fast) This means that all 3 sections of his trachea (the larynx, which is above the actual trachea, the trachea itself as well as the brochials) are weak or floppy and collapse. The hope is that with growth, these structures will strengthen.

The bronch scope is a small camera that they are able to insert through Mitchell’s nose and go down his airway so they can look at these structures. They were able to go between the trach and the side of the trachea so they didn’t have to remove Mitchell’s trach for the procedure. The doctor does it under a light sedation so Mitchell is breathing on his own and he can see how everything is working while breathing. Of course they needed an IV for this, which is always a treat. The charge nurse tried to get an IV and was unable to get one so they called a flight nurse and he was able to get it in. Mitchell did really well. He wasn’t very happy but he did not need to have any oxygen. At that time it is just a waiting game. Paul and I always say, “hurry up and wait”. They doctor ended up being almost 2 hours late which made for 1 unhappy little boy and 2 tired parents. Once the procedure started, it did not take very long.

We found that Mitchell’s laryngo-tracheo malacia has improved. (good news) The bad news was that the bronchiomalacia showed no improvement. This actually was the worst of the malacias as it is right above the left lung and it is causing those bronchials to actually almost completely collapse. This is an area that the trach cannot possibly reach therefore cannot keep it open. As we looked, it seemed as though there was a pulsing to the left bronchials where the collapse occurred. This caused concern because it could mean that a vessel is pressing up against it, which is causing the malacia. Now, those who have followed this throughout may remember this concern about a year ago when we were first discussing the trach. SO, the doctor ordered a CT scan. This would show us what, if anything were pressing against the brochials. Mitchell ended up needing a 2nd IV in order to do the CT scan. He had woken up from his light sedation and needed to be still for the CT scan. Dr.Storm (the intensivist in the ICU) was able to get an IV right away. (whew!) Mitchell did great with the 2nd dose of sedatives. The CT scan came back both good and bad. Good because it showed that all of Mitchell’s vessels are completely “normal” however, bad because there is one that seems to be interfering with the left bronchial. This vessel is in the correct spot; it is just that his left side is too weak and unable to handle the pressure from the vessel. The right side continues to look great, with no malacia (weakening).

So now what? Well, of course we were disappointed to hear that the bronchiomalacia has stayed the same and yet we find it encouraging to see that there has been some improvement with the other 2 malacias. This would lead us to believe that he may indeed grow out of this; it may just take a little longer than we had hoped. At this point, it seems that intervening with that vessel and bronchial would just be too invasive. The treatment is just “lets wait and see”. We have not talked to Dr.Welle about the results yet, but will be going into his office on Friday and will discuss what we saw and what the new plan will be. As of now, chances of decanulating (taking the trach out) this next spring or summer will be put off. It sounds like we’ll have another bronch scope done in a year.

There were also a few samples taken during the bronch. We do not know what the results of these were. They all were the typical sputum sample, one for a culture to see if there is anything “growing” in Mitchell’s trach and/or lungs that we should be a where of. One was also to test for lipids, this will tell us if Mitchell consistently aspirates without us knowing it. We hope that these tests come back “normal”.

The results of the bronch were also going to guide us as to what how Mitchell receives his early intervention services. We had started to bring him to the playgroup with about 10 other children. At this point we will have to weigh the advantages and disadvantages of “going to school”. At this point the risks may just be too high, especially during the flu and cold season, but it is something that Paul, his teachers and I will have to discuss. This will not affect how much he gets as far as services; it will mostly just affect the location of the services. However, if we would decide to pull him, he wouldn’t get that “group” setting. If this is what we would decide, it doesn’t mean that he can’t be around children in general. It would mainly be the just large groups of children. (hopefully that makes sense)

It was a very long day yesterday. As Mitchell gets older, it is harder for all of us to spend time in the hospital. I know for me it has made me appreciate how healthy he actually has been as yesterday was the 1st time going back to the PICU in a year. Though we did not get all the results we were hoping for, we still have so much to be thankful for. We have always been impressed with the PICU staff and they didn’t let us down yesterday. They did a terrific job with Mitchell and keeping us informed and including us in the decision-making. We have always been impressed with the intensivist Dr.Storm. He shows all the great qualities one wants when in a situation where your child is in the PICU. It takes a very special person to do the job he does and we could not thank him enough. We felt that he handled our insecurities with Mitchell being sedated great and he made our anxiety a little less. He commented at the end of our stay that he is so very impressed with Mitchell and how he is growing and developing. He has always been cautiously optimistic about Mitchell’s future and he was thrilled to see that as a 21 month old he is able to lead a very typical toddler life. So, though we didn’t get the “go ahead” to continue to downsize the trach and head towards taking it out, there is clear evidence of how much growing Mitchell has done in a year. And again though we can say we are disappointed about the trach, any disappointment goes away after you really look at what he has accomplished in a year. He sure is one amazing little boy.

Now as for recovery...like I said, Mitchell really had a tough day yesterday. He wasn’t able to eat all day and yet he was awake for most of it. It was very hard on him. It was actually funny to watch his reaction as we brought him home. (thanks for helping Sally!)
The minute I put him in his car seat, Mitchell’s little legs started kicking with excitement. As we pulled into the garage, he started to smile and kicked some more. He was relieved he was home! He had a pretty good night. He did have a fever of 102, but this was probably due to the trauma he had been through. It went down throughout the night. We had nursing care last night and this was a life savor. We were just beat, so much that I just couldn’t imagine going to the big homecoming game. (unfortunately, they lost) We all had a great night of sleeping. Today by 8:00, Mitchell had already had breakfast 2 times. I’m guessing that he’ll spend the majority of the day eating and taking it easy. He is getting a lot of extra lovin’ today as we both feel horrible about what he went through yesterday. Mitchell is enjoying every minute of it.

Sorry this got so long, there was just a lot of information. As I said, we’ll see Dr.Welle on Friday and I will update again and let you know what he thinks about the results and his opinion on what our next 6-12 months will entail. Mitchell will also get a flu shot.

Thank you for the prayers,
Paul, Katie and Mitchell

Tuesday, October 3, 2006 2:36 PM CDT

It’s a big week for the Cragg family. Today we went for our pre-procedure check up with Dr.Welle. He has officially okayed him for his bronch on Friday. The appointment went very well. Dr. Welle thought that Mitchell looked great, and was impressed at how tall Mitchell is getting. He said that Mitchell is very proportionate as far as weight and height go. (33.5 inches and 26 lbs) He was also anxious to hear what Mitchell was going to be for Halloween…”is the Batman suit going to make a return?” I told him that Mitchell is having a tough time deciding this year but we’d have to send a picture.

We did have something more serious to discuss in this appointment. On Friday Mitchell had 2 small breathing episodes and 1 on Saturday. These seem a little different than before which brings up some concerns. I cannot for the life of me figure out what triggered these episodes. Typically Mitchell gets made or hurt and then he cries and that is what leads him into it. However, this time there was no warning. (that we know of) Saturday’s episode concerns me the most because he was extremely disoriented. At this time there really isn’t anything that we can do except for watch him a little more closely and know that he is not of of the woods as far as episodes go. So far he hasn’t had one since Saturday. Dr.Welle said that if he has a few more of them and we still cannot figure out what is triggering them, we will probably have another EEG. His (and my) concern is that this may be the beginning of seizures. This is a very big bummer for us, but lets hope that there is something we missed and that there is something triggering these episodes.

Now for the rest of the week. We have Mitchell’s first dentist appointment tomorrow. This should be interesting. Dr.Welle said bring the oxygen and let them get him mad. We are starting to “test” Mitchell to see if getting really mad will trigger the same response as his “episode” on Saturday. I’m actually not really looking forward to this appointment. I think it is going to be a lot of stress on both of us. I think we’ll take Thursday off from school and then we have the big day on Friday. The bronch is scheduled for 12:00 but we’ll go in at 10:00. Mitchell should be home that night provided things go as planned.

So, we could use some prayers this week. Please pray that Mitchell does well during his procedure on Friday and also his dentist appointment tomorrow. We also pray for the doctors and nurses that will be taking care of Mitchell during his time at the hospital. I will try and post what we find out after the bronch. I’ll try my hardest to do it Friday night, but will certainly have an update posted by Saturday night. Wish us luck!

With Love
Paul, Katie and Mitchell

Tuesday, September 26, 2006 1:00 PM CDT

Boy, it is hard to believe that it has been 2 weeks since the last entry. Time goes by so fast around here.

As you guessed from the pictures, Mitchell had his 1st day of school. Moms and dads, you thought bringing your child to school at 5 was hard-try 21 months! Actually it wasn’t that bad, we were only there for an hour and I was with him the entire time. He has gone twice now. I think we’ll be going once a week for a while. We’ll have to discuss what we are going to do once flu and cold season gets here. Mitchell has handled getting ill very well, however we’ll have to see if he is ready to be exposed to that many kids during that time of year. The class was suppose to be only 4 or 5 kids and has grown to 10 kids. We thought this may be intimidating for Mitchell, but he really handled it well. He got a little overwhelmed on Thursday when about 5 kids came over and started playing around him. One girl tried to play with him and was “invading” his personal space; he very gently pulled her hair so she would know that she was too close. Now, we don’t encourage hair pulling, but it is nice to see that he does have some defensive skills verses being just passive. However, we’ll be working on a different way to show frustration. He really liked being around the kids and a different environment and cried when it was time to leave. I was happy to see the wide range of abilities in the classroom so Mitchell can watch how these children play and walk. The one area that is lacking is verbal communication. There is one little boy that signs fairly well, but most of the children are non-verbal. This is something we are really working on hard as Mitchell is getting to the age that communication is key if you want to try and dodge any big temper tantrums.

With that said, Mitchell is doing terrific with his verbal communication. Last week he said 10 words to his speech therapist! His vocabulary is expanding and yes it is hard to know what he is saying at times but he is getting better and better. He will do this with or without his speaking valve, which I think is VERY impressive. His words: hi, ya (for yes), meow (for kitty), blah (block), ba (ball), off, up, ou (out), ma (mom), ba (bye). He can also sign more, milk, up and movie. We are still working on signing and hoping that it will come with time but spending just as much time trying to get him to verbalize. This week we are working on the word in, so we’ll have a different sound and dad (for obvious reasons). Yesterday he really tried hard to say dad but had a hard time with getting that tongue to go where it needed to. I think that he’ll get it though in the next week or so if we really work hard at it.

An update on the bronch-it has been rescheduled for next Friday (the 6th) instead of this Friday. So, we will go in next Tuesday for his pre-procedure check and then have the bronch that following Friday. Paul and I are anxious to see what is going on with Mitchell’s trachea. We ask that you pray that the procedure goes well and that we are able to see improvement in the strength of his trachea. We are also scheduled to see a dentist next week. We have a week full of therapy this week and then next week back to numerous appointments. They always seem to come in bunches.

We hope everyone is enjoying the nice fall weather. I have been able to make it to a few football games and have enjoyed the cooler weather. The team has won the last couple games so they are doing well. They’ll have a tough one against Alexandria on Friday. Go Spuds!

Take care,
Paul, Katie and Mitchell

Tuesday, September 12, 2006 9:51 PM CDT

Things have been getting back to normal around here. Mitchell seems to be feeling better and happier than ever. He is finally done with his 2nd round of antibiotics and it seems to have worked for him.

This week we start therapy full time again. We dropped down to therapy only 2 days a week during the summer. Today Mitchell’s teacher and hearing teacher came out. He will have a new hearing teacher this year as the school has done some shuffling around. We had met this teacher right when he got his hearing aids, so she isn’t really new. However, she hadn’t seen him since he was about 5 months old, so she was quite surprised when she saw a little boy and not a baby. Today we also looked at the goals that we had made for Mitchell and our family back in January. Mitchell has made great progress and has almost obtained all of his goals. We are very proud of what he has accomplished.

We received a call from Dr.Kantak’s office about scheduling the bronch. We are planning on having the bronch done Friday the 29th. Mitchell will need to be sedated for the procedure and therefore he’ll need a pre-procedure check. He’ll also need an IV. I talked to Dr.Welle about what our plan will be and he said that we will just attempt an IV that morning. They will allow him to drink clear fluids until 6 AM that morning so I’m hoping that this will make his veins not as dehydrated. Dr. Welle still sounded leery about the entire situation, as we have failed many times at getting IVs in Mitchell. We also had a quick discussion about what to expect from the bronch. Dr. Welle said that he is expecting improvement but is not looking to decanulate him (take out the trach) at this time. I am hoping that he is correct and that we see improvement. If all looks well, we will be downsizing him after the bronch.

We had a nice weekend. My mom and dad came up and we went to the football game on Friday. We had nursing care, so Mitchell didn’t go. I was glad once we got out there being it ended up getting pretty chilly. We also attempted another meal at a restaurant. Sunday we went out for breakfast before Mom and Dad left. Mitchell again was on his best behavior. I think we are just really learning what he needs to have a successful time out. Three things are important for a successful outing, goldfish crackers, a few books and being placed in a busy area of the restaurant. Little by little Paul and I are beginning to figure out this parenting thing.

Take care,
Paul, Katie and Mitchell

Tuesday, September 5, 2006 9:07 PM CDT

So much has happened since last post, so hunker down this’ll be a long one!

Last Monday when Mitchell was eating breakfast he aspirated (choked on) part of a banana. He actually managed to get the piece of banana down the trachea and back up through his trach and then shot it out of his trach like a spit wad. Yes, spit wad is now a medical term I used to describe the incident to his doctor. He recovered very well from this mishap. We learned a couple of things with this incident; one being that we are very lucky that Mitchell has a strong enough cough to get whatever isn’t suppose to be in his lungs out and the second being we now know that if something gets into his lungs, he is able to feel that it isn’t suppose to be there. (Some children do not) After the banana incident we made sure Mitchell ate very brightly colored foods for two days and made sure that any liquid he drank was colored. He did well and I never suctioned anything else out of his trach from then on. This leads us to believe that this was just a fluke accident. For all of those who doubted your mother when she said, “it just went down the wrong pipe” note to yourself; it can happen. This is something that has happened to all of us at one time or another; however it is always a different story when it comes to Mitchell. We have to be careful that it didn’t happen due to weakening of muscles or coordination of his swallow. However at this time we do believe that it was just an accident.

After shooting a banana piece out of the trach, there wasn’t much excitement the rest of the week. I talked to Dr.Welle a couple of times throughout the week discussing whether or not to be concerned about the banana and also talking about the recent cold and ear infection. By Friday I wasn’t satisfied with how Mitchell had responded to the antibiotic he had finished so we went in to see the doctor before the long weekend. I’m glad I brought him in. He was still running a slight fever and when I brought him in Dr.Welle said that he still has his ear infection in both ears. He also still sounded very congested. He was put on a stronger antibiotic and then a sputum culture was taken. Today we found out that the culture came back the same as the last one. As Dr.Welle said, “Mitchell, you’re growing a zoo in there!” This means that the last antibiotic didn’t do its job. I’m convinced that this new one will, as Mitchell has always responded well to this particular one. He is on day 4 and seems to be clearing up a bit.

Even though he was under the weather a bit, we got the “go ahead” to get out of town for Labor Day weekend. We spent a couple days at the cabin in Nevis. We had a nice time with everyone there. Mitchell always loves the attention and seems to deal with it well. He met a few more cousins and a great aunt for the first time. And once again he got to play with some of his cousins his age. Paul, Mitchell and I also managed to go out to eat at Paul’s old work. Companeros is a Mexican restaurant that Paul worked at for about 6 years during the summers. They make the best margaritas and I can honestly say I’ve had to wait 3 years to have one! It was very tasty but left me remembering why I never have a drink when I am taking care of Mitchell for the night, it makes me way to tired. Mitchell was an A child at the restaurant. He is usually very well behaved, but when you get him sitting for awhile where he doesn’t want to be usually hearing aids and HMEs start flying. It can be very frustrating. Mitchell did great, I think it actually was the most relaxing meal I’ve had for awhile. It was nice to do that as a family being a lot of our family time is spent at home. It was also nice for some of Paul’s old co-workers to see Mitchell. Overall it was a great weekend and Mitchell did very well out of the house. He had no apnea alarms and slept fairly well.

Wheew…now for today. We had an audiologist appointment today as well as an ENT appointment. The audiologist said that Mitchell looks good. We discussed the possibility of re-testing his hearing. Over all though there really wasn’t anything to exciting about that appointment. Next we saw the ENT. He is the one who put the trach and the ear tubes in. Mitchell’s left tube is out of his ear. The doctor thought that it would be best to give Mitchell another couple months without the tube to see if he really needed to put it back in. I don’t really agree with him, but I respect his expertise and agreed that we’d wait and see. As far as the trach, he thought the trach site looked great. We talked about doing the bronch scope again and I asked what his opinion was on doing it. He thought that it would be a good idea to go ahead and have Dr. Kantak take a look so we can see if Mitchell’s tracheamalacia is resolving. He assured me that he truly believes that this trach will come out and that it will not be a life long thing. He said that he hasn’t seen a case in which it has not resolved itself including those with a chromosomal abnormality. This is reassuring to hear, however we all know that Mitchell doesn’t always go by the books or by what is typical. We will just have to wait and see. He said that generally children outgrow their malacia by age 2 though all cases are different and some take longer. We do not have a date scheduled for the bronch yet. I am hoping that we will be able to schedule that yet this week and guessing the actual bronch will not be for a few weeks if not a month or so. We’ll let you know.

We hope that you had a safe and fun Labor Day weekend. It is hard to believe that summer is over and it is time for jeans, sweatshirts, schools and football games.

Take care,
Paul, Katie and Mitchell

Sunday, August 27, 2006 9:22 PM CDT

Just a quick update and hopefully I’ll be able to tack on a couple new pictures to the slide show. (I tried earlier and it wouldn’t let me, so keep checking)

Mitchell is doing well. He still isn’t 100o we are beginning to wonder if some of this is viral instead of bacterial. He seems to do well for about half of the day and then by the afternoon he gets a low-grade fever and seems to not feel good. On top of the cold he seems to be teething, so it is hard to know what is causing what. His cough is better though and he hasn't needed oxygen. I have to say I was impressed the other day-the doctor that we saw in the walk-in clinic called to see how Mitchell was doing. This was a pleasant surprise and comforting knowing that even when Dr.Welle is out, we are still able to get quality care.

My best friend from back home came out to visit this weekend. We had a great time and Mitchell absolutely LOVED to play with Amanda. Andy and Missy also stopped by on Saturday to visit. It is always so nice to get company being we aren’t always able to get out and see people.

Hopefully Mitchell will be feeling better soon. I think this is just a wait it out type of illness. We are very grateful that Mitchell is able to handle these illnesses like he has. He certainly is getting stronger with each illness. And, it is important for him to build up his immunity.

Take Care,
Paul, Katie and Mitchell

Wednesday, August 23, 2006 10:43 AM CDT

As you can see, updates seem to be getting less frequent. As Mitchell is getting older, it is so hard to get onto the computer and get the website updated. But, I’ll continue to try, just know that they may be weekly or every other week.

Our biggest update at this point is unfortunately Mitchell is sick. He has a cold and an ear infection. He had been coughing yesterday and had more secretions than normal but they were still normal in color. He has had a low-grade temp for a couple days but I was contributing that to him getting his molars being it was only 99 or so. However, last night he seemed to hit a wall rather quickly. At 5:30 (of course after clinic hours), he spiked a temp of 102-103 and just really looked miserable. He seemed to be coughing more and more and also started to vomit. (We are unsure if the vomiting was due to coughing or actually being ill) But, with him turning that fast, I figured we’d better get him in. I’m not a big fan of bringing Mitchell to anyone but his pediatrician, but I guess sometimes you just have to. We went into the pediatric walk-in clinic and it was so busy! We saw a doctor that they actually had to call in because there were to many kids for the pediatrician working. Fortunately we got a nurse that has had Mitchell before when we have been in for our well checks. (It is always comforting to see a familiar face) Meanwhile, it seemed as though every time I suctioned Mitchell, his secretions got more yellow. I’m still amazed at how fast they changed! Usually his secretions change first and it is a gradual change that takes days…this seemed to take just a few hours. The doctor was okay though I could tell he hadn’t had many trach kids. He did what he needed to do; looked in Mitchell’s ears, listened to him and took a sputum sample. He said that there is infection in the left ear (the one where the tube is out) and also that his lungs sound a little wheezy, but not sure if that is “normal” for Mitchell being he doesn’t know him. He put him on an antibiotic and sent us on our way. Unfortunately Dr.Welle is out until tomorrow but I’m guessing he’ll call me with the culture results. As for Mitchell-today he is playing but doesn’t seem as busy as normal. His temp. has seemed to go down for now and he is still coughing up a storm and needing suctioning often. I will be watching his breathing closely today and hopefully our nurse will come tonight so he can be watched closely. We are always concerned about pneumonia with Mitchell. He has not had it yet, but honestly I wouldn’t be surprised if he ended up with it this time. Though I’m hoping that this is just a bad cough, cold and ear infection. If Mitchell isn’t showing signs of getting better by tomorrow morning, I’ll try to get him in to see Dr. Welle. I’m hoping that with the antibiotics started, that wont be necessary. He really seems to be holding his own here even though I can tell he feels bad. His saturations are staying fairly decent however his heart rate has been high for the last couple days. This is probably due to the fever and pain he is feeling with the ear infection. We try and give him Tylenol when needed and he gets a little oxygen when sleeping to help him relax a little. As I’m typing, he is napping and is actually off of oxygen, so that is a good sign.

Well, that was our exciting news. Not to exciting, but news to say the least. I will be grateful when we can get those darn tubes put back in. The one hasn’t been out for that long and he has already had 2 bad ear infections. We see the ENT the day after Labor Day so hopefully we can schedule a date then. I’m hoping we will get more of a time-line for what to expect as far as the trach goes.

Football has started and Paul starts workshops next week and then school after Labor Day. I’m looking forward to trying to get to a few football games. I’m not sure yet if Mitchell will be going to any or not, we’ll have to see how the weather is.

Hope all is well with all of you. I’ll be working on a new slide show-I do realize that the one is blank. I’ve been playing around with it and just can’t get it to come off…so, I guess I’ll have to make a new one. I’ll try and update probably after a couple of days so you will know how this illness pans out…hopefully it’ll be a quick update saying he is healthy again.

Take care,
Paul, Katie and Mitchell

Wednesday, August 9, 2006 9:45 PM CDT

Paul’s team ended up winning their 1st game and then losing the next 2 so they are out and the season is complete. It is always a bitter-sweet time in the summer. Though I wish they could’ve gone farther, it is nice to have this week off before football starts. We have made a point to go on “family field trips” everyday whether it is to the grocery store or to the zoo.

We made our first trip to the Fargo Zoo this weekend. We really had a great time. Mitchell’s favorite was the 2 little monkeys that they have. They would come up to the glass and pant at him. He thought that was very funny. Paul and I both agreed that it was because they are very quick and jumped around like they were crazy. (Humm….just like someone I know) Anyway, they also had a petting area where he could pet some goats. He liked this as well, but the goats weren’t so sure about him. They really liked my purse though. We really had a nice time and look forward to many more family outings.

Mitchell is doing well. He has been a little sensitive lately, but there are a lot of changes going on right now. I think he is getting more teeth, which is never easy. He is also off of the bottle completely and is doing better at getting himself to bed without us rocking him. Even though he seems to be doing well with the changes, he still just seems a little edgy. Hopefully he’ll get back into a new routine soon and he’ll get to feeling more like himself.

Paul is planning on taking a day or two off for himself this week before football and school starts. Then at the end of the week I’ll be taking some “me” time as well. I guess it will be our last hurrah before school starts. It is hard to believe that it is right around the corner.

Mitchell will continue therapy in September. We are also thinking about getting Mitchell in a play-group. I think that this will be great for him. He really enjoys being around other children.

We hope you are having a great summer. It always goes by so fast. Before you know it we’ll be talking about football games.

Take care,
Paul, Katie and Mitchell

Tuesday, August 1, 2006 2:40 PM CDT

It was a busy week for the Cragg family. Paul has been very busy with districts and it has seemed to pay off. Saturday night they won the district championship with an outrageous comeback against Thief River Falls. Luckily enough I was able to get one of the nurses to come on her day off to watch Mitchell for a couple hours so I could watch it. I was about to leave the game early as they were down by 10 and before I knew it they were only down by 6….and then the game was tied! I told Paul it was the worst and the best game I’ve ever seen! They played so poorly at the beginning of the game but were able to pick themselves up in the last few innings to take the championship. Not many teams would’ve been able to come back like they did; it was really fun. The kids were determined to give Paul a new haircut if they won districts. I think he is relieved that the boys are very forgetful and have yet to bring the clippers to practice. If they get him, I’ll make sure to get a picture so you can see it…I’m sure you’ll enjoy it! They will be heading to the state tournament at the end of the week. Unfortunately this may not allow us to go to my cousin’s wedding, which I was excited for. It just isn’t safe to drive Mitchell myself.

We went out on a family shopping trip around town this weekend and decided to make an attempt at going out to eat. We figured it would be a great way to celebrate the win. We went to Old Chicago for pizza. It was dinner time and Mitchell loves pizza. He really did well. I think he ate a whole piece on his own! It is nice to know that we can take him out to eat as well. Another big step for our family.

Every week he amazes me more by what he is doing. Now he has decided that he isn’t a big fan of vegetables so he now throws them on the floor. He also is becoming quite the piano player. He never pounds on the piano; he actually plays very nice and quiet and always has a look on his face like he knows what he is doing. He has now decided to “mix it up” a bit with his little table that plays music if you push the star. Mitchell pushes the star until he finds the song he likes and then plays piano to it. He really loves the piano; we’re lucky that we have it!

We are also in the process of changing Mitchell’s schedule. We are trying to get him from 2 naps to 1, trying to get him to go to sleep without rocking him and without a bottle. I thought at first this was a lot to change all at once, but later decided that it was the only way to do it. Going to sleep on his own: at first I thought I’d still give him a bottle and rock him. After he is done with the bottle, he goes in the crib and then has to get himself to sleep the rest of the way. Well, by the 2nd night Mitchell kept asking for more milk. Evidently he discovered that as long as he had that bottle in his mouth, Mom was going to rock him. (He’s a smart little guy) So, now we rock him while reading a few books, he can drink milk out of his sippy cup and when the books are done, he goes into the crib. This has worked pretty decent so far. However, Mitchell has a problem with getting mad and then spitting up. I have suspected that this is something he can control and lately he has shown me he can. He has been getting mad because we stop rocking him, coughs and tries to spit up; I tell him to stop it and he does. The nurse said last night it was obvious that he was working extra hard to spit up and finally accomplished it. Stinker, he’s just going to have to learn that doing that isn’t going to get him what he wants. He is doing great without the bottle; he actually doesn’t seem to mind at all. And, as each day passes, he gets better at getting himself to sleep. Today at his nap he even decided to lie down and fell asleep. Usually he falls asleep standing and I have to lay him down. I told him though that being able to sleep standing up may come in handy in the future. Sometimes I wish I could do that!

August should be pretty slow for us as far as Mitchell’s date book. I don’t think we have any planned doctor’s visits and most of his teachers are off in August. We will drop down to only 2 therapy sessions a week. This will be a nice little break and I hope to plan a few play dates with some friends. We will also be working hard at getting Mitchell to use his speaking valve and also for him to be off of his CPAP at night.

I’ll try and get some new pictures on when I can. As you can imagine, it is getting harder and harder to find time to post and play around on the computer. (Plus I find I’m not taking as many pictures) We hope everyone is enjoying summer and some much needed cooler weather.

Take Care,
Paul, Katie and Mitchell

Tuesday, July 25, 2006 9:18 PM CDT

Mitchell had another big weekend this weekend. He got to play with his Aunt KT on Friday. He had a fun time playing and showing her all of his new tricks. We had nursing care so we were able to catch the end of Paul’s game and go out for a few drinks. It was a very nice visit.

We also traveled to Mitchell’s Great-Grandpa Jim’s cabin on Saturday. It is about a 3- hour drive. Mitchell was able to keep his saturations under control on the way to the cabin, but he didn’t sleep at all. On the way home he did need a little O2, but only when he was sleeping. We stayed the night on Saturday and Mitchell slept in his pack-n-play (playpen). He really had a good night, only de-satting once (which is pretty typical) and had no apnea alarms.

Mitchell was able to meet his Great-Uncle Mick and also his Great-great Aunt and Uncle along with some cousins. Grandma was there also along with Great-Aunt Teri and Great-Uncle Thom. (wow….lots of greats…) They were all so pleased to see how well he is doing. And I really think Mitchell enjoys a change in surroundings. (as do his mom and dad)

We are getting to be pros at packing up the van for an overnight stay. It is a lot of work but once we get to the destination and get all unpacked, it is worth every minute of packing. It is so much fun to be able to take Mitchell places especially when it is his first time meeting someone. I always enjoy seeing the look on whoever is meeting him for the first time. It means so much to see the joy in their eyes when they see our tough little guy. He sure is a special little guy that has caught the heart of many people. We hope to get a few more traveling trips in before winter. (Unfortunately it is right around the corner)

Mitchell continues to believe that he can walk and stand on his own. His physical therapist said that our job was to keep him out of the emergency room the next couple months. Mitchell will stand up next to furniture and just walk away from it. He has absolutely NO fear and thinks it is funny when he falls. He is also trying to get in the standing position from the crawling position. However, he has yet to stand on his own for longer than 10 seconds. He works hard though. I have to say, that is one of the things I admire the most about Mitchell. For as much as he has been through, he still tries harder than any other child I have seen. (I may be a bit biased)

This week is crunch time for Paul’s baseball team as they enter districts. It is hard to believe that it is already that time. We’ll let you know how the season ends. We’re hoping it ends at the state tournament.

Take Care,
Paul, Katie and Mitchell

Monday, July 17, 2006 9:45 PM CDT

It has seemed like forever since I have written an entry….lots has happened so be prepared for a long one.

Mitchell is doing well. He had a few tough days last week because he ended up with an ear infection. The little stinker seems to have such a high pain tolerance, that we didn’t notice it until it was REALLY bad. We went in to see his pediatrician and he was surprised to see Mitchell so perky given the condition of his ear. He was a tough guy until Sunday. Then he spiked a fever of 102.8. We ended back in to see the pediatrician again on Monday and he was put on some heavy-duty antibiotics. After 1 dose, Mitchell was back playing like normal.

We saw the pulmonologist last week as well. He seems to agree with the pediatrician about moving forward with downsizing, weaning off of CPAP and getting him on his speaking valve more. These are the steps we need to take in order to get closer with getting the trach out. We still have a ways to go, but we are headed in the right direction. I think he will do a scope in the fall to see how Mitchell’s trachea is doing.

We also saw the rehab. Doctor. We talked about Mitchell’s orthodics and how they are working. He watched Mitchell walk up across the room a few times (assisted) and thought he looked good. Wouldn’t you know, Mitchell didn’t turn his right leg in when he walked for the doctor. Because of that Dr.Klava said that he thinks it is something that will go away once he bares weight more and begins walking on his own. He looked at the hip x-ray and said he still thought it looked ok. He isn’t the orthopedic doctor though, so he said we’d have to ask him for an “official” ok on the hips. Overall he said he was impressed with how Mitchell was doing. He could tell he was more stable since the last time he had seen him. Unfortunately Mitchell forgets he can’t walk and stand by himself and because of that has taken many tumbles lately.

Grandma came to visit this weekend. Paul was in Princeton at a tournament so it was just the gals and Mitchell. The three of us had a lot of fun. It was so stinkin’ hot, we weren’t really able to do much outside, but we were able to get Mitchell out in the pool.

I cringe as I type this, but we had our 1st accident resulting in a goose egg last night. I had washed the floor and put the chairs on the table so I could get under the table. I had the kitchen barricaded so Mitchell would not be able to get in and cause trouble after his nap. Well, we got busy playing and soon it was supper. I made supper while he was in his high chair and we ate. Paul came home and things just got busy. Paul had been gone all weekend, so we were talking about the ball games and Mitchell’s and my weekend. This was as I was taking Mitchell out of his seat and letting him play around. I had forgotten 1 chair on the table and of course he found it. He pulled it down on himself and got a goose egg on his forehead. Now the only good thing about this whole ordeal is-NO EPISODE! I really can’t believe he continued to breathe through it all, because I don’t know that I was. We put ice on it right away and got him calmed down. We had nursing care so she was able to watch him close through the night. Mitchell recovered in about 20 minutes. Mom however, I’ve yet to fully recover. The guilt has been tough to overcome, but I guess everyone makes mistakes and Mitchell hasn’t seemed to hold it against me. I think Mitchell cried all of 10 minutes, I cried off and on all night. Today I just feel sick thinking about it but at least I’m over the crying.

We start therapy up again this week. The school has been off for a couple weeks so we’ve had a few free weeks. It is always fun when they come back from a break and Mitchell can show off all of his new tricks. We shouldn’t have any doctor appointments coming up. We are working hard at getting Mitchell off of his CPAP. My goal is to only have him on it now at night. He has gone 2 days now without having it on during his nap and he has done well. Tonight he is a little dry but I think the nurse is going to give him a neb and hopefully we’ll be back on track. We also downsized his trach again. Mitchell now has a size 4.0 in. (started at 5.0) He has done well with the new trach and he is jabbering up a storm. We are so blessed that Mitchell has done so well. It is so hard to believe that he is already 19 months old!

Take Care,
Paul, Katie and Mitchell

Wednesday, July 5, 2006 8:02 PM CDT

We hope everyone had a great 4th of July. Paul and I decided that Mitchell was ready for his 1st overnight stay away from home. (other than the hospital of course) Paul had a few days off from baseball so we decided to take Mitchell up to the cabin in Nevis. Once again the final decision wasn’t made until Monday morning. Mitchell has been fighting a cold, so we were hoping that he would have a couple good nights without desatting before we left.

We had a nice couple of days at the cabin. Mitchell got to meet many of his cousins and he stood in awh while watching them play. He also got to meet many of his Great Aunts and Uncles. We went visiting and many came to visit us. I’m sure Mitchell was wondering what was going on, as anytime he would wake up from a nap there would be a few more kids around. We visited some friends and Mitchell LOVED the dogs. Anytime the dog would bark, Mitchell would laugh. This ended up being great entertainment for him, and it allowed us to visit awhile.

It was exciting to see how well Mitchell adjusted to his new surroundings. We were lucky that we were able to borrow a crib from a cousin that had moved to a toddler bed. (Thank you Michelle!) I think that it really helped Mitchell in having a smooth transition. He slept great and wasn’t too hard to put down for his naps and to bed. His 1st nap was the only one I really had a tough time, but that is to be expected and it really wasn’t even that bad. Mitchell didn’t have any apnea alarms either night. The first night the only alarm that went off was the one that tells us his CPAP valve has fallen off. That is usually from moving around and no big deal-but still wakes you up at night. The second night he had a couple low saturation alarms. He was fine and it only happened a few times, so he never needed oxygen. Overall, there were really no more alarms than he would’ve probably had at home. So far he “passed” his first test with overnight stays, we’ll have to see how the next couple nights go to give him an official “passing grade”.

Paul and I are excited about the possibility of taking Mitchell places for more than just the day. We have a few “goals” in mind and hopefully Mitchell will be well enough the rest of the summer and fall to obtain these goals. The biggest concern is the actual drive. I think once we get to the place, he’ll be fine. Mitchell still isn’t the greatest in his car seat. He behaves well, but just doesn’t keep his saturations up like he should. Both on the way to the cabin and home he ended up needing just a little oxygen to boost his numbers up. I’m hoping that with a little bit more experimentation with positioning his head, we can improve that.

Mitchell has some important appointments next week. We will be seeing the pulmonologist (lung dr). He will make the decision on if we should do a scope on Mitchell to see how his trachea is doing. I’m guessing they’ll either do one towards the end of summer or next spring/summer. We are all very anxious to see what his trachea looks like. Mitchell also will meet with the physical medicine doctor. He is the one who prescribed Mitchell’s orthopedics so he’ll take a look at them and see what he thinks. He’ll also look at Mitchell’s hip x-ray and let us know what he thinks. We’ll also see Bruce, the guy that made Mitchell’s braces. He’ll also see what he thinks about the fit and how he is using them. So, we have a busy week.
We hope that everyone had a great 4th of July. Again-Hats off to Mitchell’s successful trip to the cabin-and here is to many more “overnight” trips. We are so pleased with each milestone he reaches!

Happy 4th,
Paul, Katie and Mitchell

Tuesday, June 27, 2006 9:46 PM CDT

Well, going to the doctor always seems to lead to something. Mitchell now has a cold. He is actually on the back end of it and really has done pretty well. He has been able to keep his saturations up enough not to need oxygen at night. He is just a little extra sensitive and needs to be suctioned a lot. This of course has made us decide to put off downsizing him until probably after the 4th of July. This isn’t a big deal, but I am very anxious to get that size 4 in to see how much more he’ll vocalize. I know that he’ll probably do fine with the smaller trach. I just want to make sure that if he does have a problem, we’ll know that it isn’t due to him being ill.

We also got a call from Dr.Welle’s office today and he has decided that we need to go back and see the orthopedic surgeon. Dr. Hasbeek will look at Mitchell’s hip x-ray again and basically do a re-check to make sure we aren’t missing something with his hips. At this time Mitchell’s hips aren’t moving like they should. The question we are trying to answer is; are we dealing with a bone issue or a muscle issue. What ever it is, it seems to be interfering with his ability to get to the sitting position without a big struggle. We also have a follow-up visit with Dr.Klava. He deals with the muscle point of view. If it is a muscle problem-we will continue to do stretches and possibly look at botox injections for his hamstrings. We’ll let you know what we find out. Chances are our appointments wont be until after the 4th.

Mitchell took 4 steps on his own on Thursday! He is getting more and more stable on his feet. We are also working on getting him to stand by himself. He also signed “baby” for the first time this week. It is great to see that Mitchell is continuing to make progress developmentally. Each “first” is so great to see. I know that Paul has really enjoyed being home this summer as he is able to get in on seeing those “firsts”.

Take care,
Paul, Katie and Mitchell

Thursday, June 22, 2006 8:14 AM CDT

We had a great doctor’s appointment yesterday. Mitchell is officially off the “watch weight” list. Of course we still have to make sure he is maintaining weight but no more counting calories! This is a great feeling. In just a couple months Mitchell has moved from the 10th percentile to almost the 40th percentile. Now we will be trying to get Mitchell off of the bottle. He really does well with the cup; we were just keeping the bottle for volume sake. I’m planning on dropping his 10PM feeding tonight and dropping his morning bottle (he only takes 2 ounces anyway-which he can do from a cup). This will get us down to only 2 bottles a day. I think I’ll give him a little time to get use to that change and then we’ll see how we’ll cut out his other two. That will be the toughest because they are before his afternoon nap and before bed. But, the goal is by August so I think we can do it.

Dr. Welle also said that we could downsize Mitchell’s trach again. So, he will be going from a 4.5 to a 4. I’m not sure if we are planning on doing that this week but hopefully it will go smoothly. We also talked about weaning him from the CPAP machine as well. This will come a little later being we don’t want to change too many things at a time. We’ll be seeing the pulmonologist in a couple weeks and he’ll determine when the next scope should be done. At that time we’ll also have another hearing test done (ABR). This needs to be done under sedation, so we plan to do both procedures together. The scope should tell us if his trachea is getting stronger. Like Dr.Welle said yesterday, it is a waiting game and there really is no other way to find out if it is getting stronger. I can’t imagine it not getting stronger. Just looking at Mitchell makes me think it is, but looks can be deciving as I think back to before he was trached, we thought his breathing was getting better. So, I guess we’ll just have to wait, pray and hopefully when it is time for the scope, we’ll have good news.

Mitchell’s tubes seem to be holding on, but are starting to fall out. I suppose when they do, we’ll have to discuss if we’ll have to bring him back in the OR to get new ones put in.
We also had a hip x-ray done and Dr.Welle said that it looked acceptable. However, we’ll still be watching them closely.

Overall he was very impressed with Mitchell’s progress. Still a little puzzled about why he is continuing to have his apnea alarms at night. However, they have gotten down to one or two a week. He really is doing great though and we are excited about his progress. We continue to get Mitchell out and about more. He has enjoyed going to baseball games, and the player’s moms have enjoyed having him there.

Take Care,
Paul, Katie and Mitchell

Sunday, June 18, 2006 9:51 PM CDT

Happy Father’s Day!

Mitchell turned 18 months old on Friday. It is hard to believe he is already 1-½ years old. We are so blessed.

Mitchell and I went to Paul’s baseball game for a bit on Friday. We managed to learn that Mitchell is stuck to a schedule and what ever you do, DON’T MESS WITH THE SCHEDULE! Mitchell took a nice long morning nap, so I thought we could get to the game, which would put off his afternoon nap by ½ hour to an hour. Well, BIG mistake!
On the way home Mitchell decided it was time for a bottle and a nap….NOW! I was by myself so I had to stop and park in a parking lot to try and calm him down. I knew Paul was also on his way home so I had him stop by to help me. We ended up leaving Paul’s vehicle in the lot and had him drive us home so I could be in the back trying to calm Mitchell. It just wasn’t safe for Mitchell or myself to continue to drive while trying to keep him calm. Once again he showed he is getting stronger by NOT having a breathing episode. I guess I knew that Mitchell needed his schedule, but I guess now we know what will happen if he doesn’t stay on it.

Tonight Paul, Mitchell and myself made it on T.V again. (If anyone wants autographs, please send a self addressed stamped envelope) Mitchell and I went to Paul’s baseball game tonight and the camera guy thought Mitchell looked good in his baseball outfit and cap so he took some shots of him. Of course we had to watch the news at 9:00 to see if he made it…they had a quick photo of Mitchell “reading” his book followed by Paul giving kids signals. Okay, I guess I myself really wasn’t on-just for a brief second as they zoomed in on Mitchell. (which is fine with me!) Paul’s team ended up getting 3rd in the tournament and Mitchell ended up doing MUCH better on the way home. (made sure we were home by 2:00 SHARP for nap time)

That was our excitement for the weekend. Mitchell is hearing aidless this weekend. The audiologist is taking a look at them because they have been acting funny lately. Hopefully I’ll be able to pick them up on Monday. We see Dr.Welle on Wednesday for Mitchell’s 18-month check—up. Mitchell will get shots and we’ll talk about downsizing the trach again. I’ll let you know how the appointment goes.

Happy Father’s Day,
Paul, Katie and Mitchell

Tuesday, June 13, 2006 6:26 PM CDT

Well, our T.V interview went well. We were at the PICU and were able to see a few of the nurses that Mitchell has had. It was so fun seeing them and I think they really enjoyed seeing Mitchell. Our interview was only a couple minutes long. We talked a little about what Mitchell has been through at the hospital and how they treated him as well as us.

Mitchell received his braces on Friday and Grandma, Mitchell and I went all around Fargo/Moorhead trying to find shoes to fit around them. We finally got a pair and he really doesn’t seem to mind them at all. We will have to go in for another fitting tomorrow because it looks like they are a bit too tight. Hopefully we can get that taken care of.

Grandpa and Grandma came to visit this last weekend. They had a lot of fun playing with Mitchell. We also went to Rib Fest for my birthday dinner. We were thinking about trying a restaurant with Mitchelll, but I just don’t think he would tolerate that well. (especially after shopping for shoes all day) This way we could walk around with him in the stroller. We all enjoyed it and who wouldn’t enjoy a birthday full of “fair food”!! (Yes including cotton candy!) Mitchell enjoyed the sites as well.

Nursing care has been working out great. We are now getting 5, 12 hour shifts a week. This really is such a big help!! The nurses do a nice job. Of course they still have lots to learn about Mitchell, but they are learning fast.

Over all, Mitchell is doing great. I think we have an appointment next week with Dr. Welle and I’m hoping we’ll get to downsize his trach again! He is talking more and more! He can say “up” and is really working on “Meow” (for kitty). At this time Mitchell gets “Meow” turned around a bit and says “ow-mmm”, but hey we know what he means.
His voice seems to get stronger week by week and this is very encouraging.

Doing Great,
Paul, Katie and Mitchell

Wednesday, May 31, 2006 8:35 PM CDT

Well it has certainly been awhile since our last posting. We have been so busy around here.

We have been working with MeritCare home health on getting nurses into the home. We trained 2 in last week and then got some hours covered last week. This week we actually have all 60 hours covered!! It has been great sleeping in my bed all week. The two nurses really do a nice job. I think they are just temporary (they typically don’t do nights) while we are searching for a more permanent one.

Mitchell has been doing great. We have spent a lot of time outside taking walks and trying to get him to like the grass. We have discovered that we have to be a little careful about the heat as he had a tough time last week with the 97-degree day. He was fine, just needed a little oxygen to help him keep his saturations up and heart rate down.

We’ve had visitors, Grandpa and Grandma, Nana and Papa. Auntie KT and Jeff. Mitchell has loved all the attention and I’ve managed to get my flowers planted.

Mitchell and I made our school rounds the last few days. Last Friday we visited the Middle School where I use to work. We had pot-luck lunch with everyone. It was so fun to see everyone again and they enjoyed seeing Mitchell. (many had not met him yet) Yesterday we went and had lunch with Paul and the High School. Mitchell enjoyed showing everyone what a spit-fire he is by jumping all around. I think they enjoyed seeing him so active and I think Paul really enjoyed showing him off.

Today was a big step for myself. Paul and I “switched rolls” as I went with a group of science students to the science museum in the cities. My friend Sally was also a chaperone with me. We had a great time. We went through the exhibit “Body Worlds” which was very neat. Meanwhile, Paul stayed home and played with Mitchell and sat in on his speech therapy session. Nana came to help out and it sounded like the three of them had a great day. I think Paul enjoyed spending the day with Mitchell and I’m sure Mitchell loved spending the day with his dad.

We will be sharing Mitchell’s story once again on the Children Miracle Network Telethon. I hate doing the T.V interviews but it really is for a good cause. We wouldn’t be anywhere without MeritCare’s Children Hospital so we are glad to help them out. It will be on Saturday on channel 11 and we’ll be on around 6/6:30. Wish us luck!

Take Care
Paul, Katie and Mitchell

Tuesday, May 16, 2006 7:54 AM CDT

Mitchell went to his first “concert”! Rachell and Hopkins from his signing videos (Signing Time) were in Fargo performing. I thought that he may be just a little too young for this, but thought I’d give it a try. They were outside and it wasn’t very warm so with just getting over a cold, we didn’t stay long. Rachel started singing and signing the theme song, and then I knew, he wasn’t too young at all! Mitchell’s face lit up, he smiled and started jumping around! He loved it! His eyes were glued to the stage. After the theme song she did 1 more song and then started to read and sign a story. Again, being it was cold we ended up leaving but it was well worth seeing him that excited for the 5 minutes it took to sing the song! Mitchell also got to pet the police dog Onyx. He wasn’t really sure what to think of her. Lastly, he got to pick a free book. He enjoyed digging into the pool to pick a book. Overall I think we were only there for about 30 minutes, but it was fun.

We also got a chance to see Paul’s cousin Maggie play volleyball. Mitchell really enjoyed being out and it was fun for us to go out “as a family”. We saw Paul’s aunt and uncle Bob and Donna as well. Again, we are never able to stay in one place for very long. We keep Mitchell on a relatively tight schedule. It seems to help with sleeping and his apnea. So, only about an hour visit and then time to go take a nap. It doesn’t matter how long we are out, it is just nice to be out and about.

We are still in the search for new nurses. Plans abruptly changed again this weekend. We are now without nursing completely for the week. I will spare you the details. So, I will be camped out on Mitchell’s floor every night until we can get some hours filled. Mitchell has been doing his part in helping Mom as he has been sleeping in until 6:30/7:00. He usually is up at 5. That in itself has been extremely helpful. I sure hope he keeps it up. I think we may have a nurse come out on Thursday to do some more training with Mitchell. We met her last week and really liked her. I believe she will just be a temporary nurse until we can find a couple more permanent ones. Our new agency is working very hard at filling out hours. I’m guessing that we will be very pleased with the new agency and am excited to “start fresh” with nursing care. Live and learn…we have learned some dos and don’ts in home nursing and it will be nice to start over.

Hope everyone had a nice Mother’s Day. I’ll try and post some new pictures sometime today.

Take Care
Paul, Katie and Mitchell

Wednesday, May 10, 2006 7:50 AM CDT

Picture 15 specialist/professionals sitting in a courtroom with Mitchell and I sitting on the stand and everyone looking at us and talking to us and about us. This is what our experience was like at the Cleft Clinic. Being I previously worked in the school setting, I was use to IEP meetings or other meetings were there is a number of people that share information including myself. However, I’ve never felt so “on the spot” or “on stage”. I was very surprised and somewhat disappointed in the afternoon set up for the clinic.

All of the professionals were very nice and on the most part very impressed with Mitchell. In the morning we had a 2-hour appointment. During this time we went to different “stations” in which Mitchell saw a different specialist. Keep in mind that these people have never seen Mitchell before or even know his history. Basically, here is what they had to say: Audiologist-I have nothing to recommend, he is currently seeing an excellent audiologist through MeritCare. Pediatrician-Wow, he’s trisomy 13? Doesn’t look like he is. I think he looks great-lungs sound good. Speech-I’m very disappointed that Mitchell is only getting one day of speech a week. He is very behind due to all of his issues. I would recommend AT LEAST two days a week. Developmental Screening done by a nurse-Well, he’s a little behind gross motor as well as fine motor skills. We then saw a social worker-she just made sure we are plugged into everything we needed. Dr Lamb-he looks great, he has grown. Ortho-You should get him into a dentist but as far as I can see it looks like you take very good care of his teeth.

Basically there was nothing we didn’t know or that we haven’t already talked about. We know Mitchell is behind but considering where he came from, he is doing great. We see him making weekly progress therefore we are not too concerned with his progress. We have seemed to see a “stand still” with his signing and this is a little concerning so we’ll have to spend a little more time working on this. We are also a where that speech is an area that is going to be extremely difficult for Mitchell. But, he has been vocalizing more every week and this is the beginning of speech-just like any child. Paul and I are going to look at our schedule and “re-evaluate” where our time is going in terms of therapy. I still stick to only one therapy session a day. Mitchell needs time to be a boy and just play without having someone guiding him through therapy. I think this is very important for development as well.

I’m not really sure if the cleft clinic was worth the stress on both Mitchell and I. Mitchell ended up missing a nap and having a very “off” day. He was very touchy/sensitive all day with all of the people looking at him and messing with him. The next clinic is not for another year so we have time to think about it. The best part about it was not paying for an office visit to see Dr.Lamb. (Mitchell’s plastic surgeon) But, we’ll have to weigh out if the stress was worth it. It was an interesting day.

On the flip side-Our new nursing agency is already proving that we made the correct decision. We will have a nurse come out today to spend some time with Mitchell and myself. She probably will just be a temporary nurse while we continue to look for a more permanent team for Mitchell. However, our old agency would never have done that. She will come out today and then a day next week for some hours. Ruth, our “new case manager” said that she is piecing some staff together so that when the 20th comes, we aren’t high and dry when it comes to care. We’ll at least have 3 or 4 nights covered. We are already very pleased with how hard they are working for us. I have to say in the last 2 weeks it seems that they have worked harder than our old agency did in the last 10 months.

Long long post today. Overall, things are going well. Mitchell still has his darn cold and is still on oxygen when sleeping. It hasn’t seemed to keep him down during the day. His saturations aren’t the greatest but he hasn’t required oxygen during the day. We are going to give him the rest of this week and if he isn’t off of oxygen by Thursday or Friday we may end up putting him on some antibiotics for his infection in his trach. We are trying to get him to fight the infection on his own because we don’t want him on antibiotics again. So far he doesn’t have a fever so we are optimistic that he is indeed fighting it off. I evidently could type all day so I’d better “sign off”. Prayers—Please keep Mara’s family in your prayers as they go through having her funeral today.

Take Care,
Paul, Katie and Mitchell

Friday, May 5, 2006 5:05 PM CDT

Two posts in 1 week…

Today we saw a physical medicine doctor. Mitchell was reffered because of his feet turning in while he walks. This is somewhat typical, but our doctor and physical therapists wanted to get a second opinion. Dr. Klava felt that Mitchell’s feet were turning from the hips. This is something that should correct itself with time and practice. However, he did notice that Mitchell has pretty floppy feet. He thought that it would be in Mitchell’s best interest to get supports/braces to put in Mitchell’s shoes to support his ankles. We plan to make the appointment for next week. I found that Dr. Klava was very helpful. At the end of our appointment he looked at me and said, “You know, I have to be honest. When I looked at Mitchell’s chart before coming in, I wasn’t sure what to expect.” He continued to talk about other trisomy children he had worked with and that he expected to see a severely disabled child. We have always been told that Mitchell is doing well considering his diagnosis, but I’m not sure that I’ve ever seen someone looked so puzzled. He was almost to the point of being speechless, all he seemed to get out was, “he looks so good, so healthy.” Paul and I have always been so proud of Mitchell, but I can say that it was definitely a very proud moment. Once again we are reminded of how very fortunate we are to have such a special little boy.

On the flip side....Paul and I have been struggling with the decision to switch nursing agencies. We have been with our current agency since Mitchell had his tracheostomy a year ago and they have yet to fill all of our hours. Though we had found a nurse that we really like, we still feel it would be in Mitchell’s best interest to switch. Our current nurse is pregnant and we have found her not to be as reliable as she once was. (This made our decision a little easier) We however may end up without nursing care for a week or two in the transition. This will prove to be difficult-I just pray that during this time Mitchell is healthy. It seems that our last day with our “old agency” will be May 20th. We will be switching to MeritCare home health. This agency is affiliated with Mitchell’s hospital. This will make communicating with his doctor a lot easier. I also believe that they have a bigger “pool” of nurses because of the hospital. At the beginning this seemed like it was going to be a smooth transition (ya right), however now that we have gotten into it a little more it may be harder than it seems. I know this isn’t going to be extremely smooth but know that MeritCare will do their best to make it as smooth as possible. We believe that in the end we will be much happier.

One last note. I’m not sure if it is having a child with disabilities or just being a parent in general but I have come across so many families that need special prayers. I know that there have always been families like this, but I guess we are just a little more awhere since Mitchell. A family at our church needs your prayers. In April they had a little girl with a heart defect. She has been fighting so hard and this afternoon they had to make the difficult decision to shut off life support. Please keep the parents and little Mara in your prayers.

We will try and post again Tuesday or Wednesday. Mitchell will be going to the Cleft Clinic on Tuesday. This is a day full of doctors and specialists. He will see Dr.Lamb (plastic surgeon), PT, Speech, OT, and a dentist. (I think that's it) It will be a busy day for us. We'll let you know what we find out.

Take care,
Paul, Katie and Mitchell

Wednesday, May 3, 2006 8:42 PM CDT

Mitchell had a doctor’s appointment today for some more shots. Dr. Welle is really good about breaking up his shots so we don’t have more than 2 at a time. This makes it a little easier on Mitchell. The appointment went well. Mitchell weighed in at a whapping 24 ½ pounds! I think that this is the first time I’ve seen Dr.Welle very happy with Mitchell’s weight. I then confessed and admitted that they weighed him with his clothes on this time. (usually they don’t) Well, even with the confession, he was still very happy with his weight. This is a big relief, as I still get so nervous every time we go in and get a weight check. We discussed many things today; many had to do with summer plans of actually going places. Dr.Welle agreed that Mitchell was ready to adventure out keeping in mind that if he gets over stimulated he seems to have more sleep apnea. This is just something we are going to have to keep a close eye on. We talked about when we need to bring his oxygen around. He agreed that it is wise to have it with us at all times, but thinks we should be able to keep it in the car in case we need it instead of lugging it around every where. We discussed a possibility of getting a smaller, more portable CPAP machine so if we decide to do an overnight we don’t have to bring the big air compressor and the IV pole. I’m not sure if getting a smaller set up is going to be possible but hey, that’s what our new minivan is for isn’t it? I think I’ll show a picture of how nicely it fits in the back. Overall, Dr.Welle was extremely impressed with how Mitchell is looking. I think he really likes the feistiness in him. Dr.Welle went to look in his mouth and Mitchell chomped down on his tongue depressor and wouldn’t let go for anything! We also talked about downsizing Mitchell’s trach again. This will be finalized at our next appointment in June. Right now he has a 4.5 in and we would go down to a 4.

Mitchell started to get a runny nose last week but it didn’t seem to bother him until this week. We had physical therapy on Monday and Mitchell was a little sensitive for Brian. So, we didn’t have his teachers come out on Tuesday or Wednesday, just to give him a break. He has done pretty well with his cold though. His breathing has been fine and only needing a little oxygen at night to help keep his saturations up. During the day he is able to still be on his HME.

Grandpa Jim and Sandy came to visit on Sunday night. Mitchell really enjoyed playing with them. Sandy soon learned that Mitchell has LOTS of energy and that she can say “no” when he wants her to jump with him. We really had a nice time visiting; it was so nice to see them. It would be so nice to be able to make it up to their place this summer.
Mitchell enjoyed the visit a little too much. After they left Mitchell followed them to the door and looked out and started to cry. Evidently he wasn’t ready for them to go yet.

I will try and scrounge up some more pictures. Actually, I did sneak a picture of Mitchell’s newest trick. Fortunately he has only discovered the water cooler once. I am hoping that he forgot how cool it was to watch the water poor out! So far Mitchell has noticed that there are a lot of fun things to play with in the kitchen and bathroom. (And yes he has gotten into the toilet)

Take care,
Paul, Mitchell and Katie

Sunday, April 23, 2006 9:39 PM CDT

We have been very busy around here...

First of all, Friday’s hearing test went as expected. Mitchell was tested in a booth without his hearing aids and with them. Without, Mitchell showed a moderate to severe hearing loss. This was not unexpected as it is very similar to what his other tests have shown. He has never been tested with his hearing aids, so Friday was a first. Mitchell seemed to be just on the border of normal and mild hearing loss. This is very good. It shows that Mitchell’s hearing aids are doing what they are suppose to.

Today was a big day for our family. This morning Paul and I made a last minute decision to go on a little road trip with Mitchell. Paul’s grandma (Mitchell’s great-grandma) has not been able to meet Mitchell yet. She will be turning 90 in June and so the family has planned a 90-day count down until Grandma’s birthday. Each family member has been assigned a day to call, write or visit. Mitchell’s day is actually tomorrow, but Paul couldn’t get off of school, so we surprised Grandma Elsie with a visit today! Nevis is about a 2-hour drive for us so it was a big test to see how Mitchell would do. It was so nice for all of us to get out of the house and out of town together. Some of you, okay all of you, are probably very surprised. We figure that Mitchell has been doing so well lately that it is a good time to test him. Paul and I had been playing with the idea in our head for a few weeks now but didn’t want to mention it to anyone because we actually were not sure if it was going to happen. But, Mitchell had a great night last night and looked great this morning so we thought, what the heck…lets give it a try. Of course we had ALL of our equipment (and I really mean ALL). Actually with our new minivan and all of our equipment, I felt like we had our very own ambulance! Mitchell did very well on the trip. He enjoyed seeing everyone and we really enjoyed visiting as well. (In between chasing him) We stopped and visited with Grandma Elsie as well as Rob and Leslie (Uncle and Aunt) and also stopped at a few of Paul’s cousin’s houses. We would’ve loved to see everyone and make more stops, but just didn’t want to press our luck and it was getting to be Mitchell’s naptime.

I thought that this first trip would make me have ulcers but surprisingly I wasn’t very nervous. I was a little concerned about naptime in the car without the CPAP and in the car seat. Mitchell did okay, not great but okay. His saturations were a little lower than we’d like and heart rate a little higher than we’d like while sleeping. This is probably due to not having the CPAP on. He did manage to keep his saturations high enough and heart rate low enough not to need constant oxygen. At one point I gave him a whiff of it to see if it would bump him up and it did, so no more was needed. So far he has done well with the trip. With Mitchell, you have to actually wait until the next day to say how it went. This is because typically he will do fine but have a rough night. We had a very tough time getting Mitchell to bed tonight. I usually have him down by 7:30/8:00 and he really wasn’t sleeping until 9:00. I think he was just very tired and just had a lot of stimulation today. I guess this is something that most kids go though if they’ve had a big day, so not really out of the norm. Hopefully he will have a restful night with few alarms. We really had a terrific day in Nevis. It was so refreshing to get out. We are hoping to have more surprise visits in the future.

Madison, we want to congratulate you on your 1st communion today. We really wish we could’ve been there. We hope you had a special day. Hopefully we can make it up to Nevis when you go visit your grandma.

Enjoy the pictures. We will try and get more on at the end of the week.

Take Care
Paul, Katie and Mitchell

Sunday, April 16, 2006 9:25 PM CDT

Happy Easter!

Mitchell’s trach change went well on Friday. He seems to be doing okay with the new size. He has been extremely dry for some reason, but he continues to be on the HME and not the CPAP machine. I’m not too impressed with how his lungs have been sounding lately, but they sounded like that last week as well, so it isn’t the new trach. He sounded better this afternoon. I think it is just one of those “wait and see” things.

Well, as of Saturday I joined new level of motherhood. I am now considered a “minivan mom”. It was hard breaking down and buying one, but we really just had to do it. I always knew some day I would have to get one, but never thought we would only have one child when we did it! We have come to the conclusion that if we plan to ever go anywhere with Mitchell, we’ll need a bigger vehicle. So far I think it was a wise choice. We took Mitchell for a “joy ride” on Saturday for a couple of hours to see how he would handle being in his car seat that long. He did pretty well and we enjoyed playing with all of the “cool” features. (Okay, now my life is really sad if I’m using cool and minivan in the same paragraph) Actually I think it will make my life a lot easier.

Mitchell made the decision on which church service to go to and he decided on the 7:00. Mitchell usually has been good in church; today was a different story. He just wouldn’t cooperate this morning. As soon as I got him out of the sanctuary, he was fine. Get him back in, he was crazy, crying and wiggling. I think it was a combo of being warm and the music being too loud for him. He didn’t like the trumpets.

We also found out that Mitchell isn’t a big fan of grass. The Easter bunny came and scattered Easter eggs all over our lawn. Paul and I brought Mitchell out to pick them up and he cried if his hands had to be on the grass. He did have a great time banging the eggs together and trying to eat them. We had a nice lunch with Nana and Papa and then the weather was so nice we went for a long walk. Nana and Papa got to see first hand what I mean when I say I always get nervous taking Mitchell somewhere because you never know when he is going to spit up EVERYWHERE. Mitchell got a little tickle and started coughing. Often times this will trigger a gag and watch out! There went lunch-a good 3 ounces all over his shirt and, remember the hat he had on in last weeks picture? Well, it worked great to catch it. (Sorry Grandma) Now imagine if we would have been at church? What a mess.

Oh-Mitchell will have his hearing tested in a booth on Friday. It will be interesting to see what he hears and what he doesn’t hear. I think they will be checking him with and without his hearing aids. We’ll let you know how it goes.

We had a nice Easter. We really enjoyed the company and the nice weather. Hope you had a great one too.

With Love,
Paul, Katie and Mitchell

Wednesday, April 12, 2006 9:36 PM CDT

Well, didn’t think we’d write again this week but it has been a busy week. We got some great news from Mitchell’s doctor this week. He along with the ENT have decided that we are going to start downsizing his trach. This means that we will just put a slightly smaller trach in the next time we do a trach change. Mitchell should be able to tolerate this and hopefully be able to produce more sound. Our next trach change will be on Friday. We decided to do it then because we will have nursing care all weekend. We are not anticipating any problems but Mitchell should be watched closely just in case. Please say an extra prayer that all goes well on Friday.

Today was a big day for Mitchell. He got to see the EASTER BUNNY! I got the courage to bring Mitchell to the mall by myself to get his picture taken with the Easter Bunny. Mitchell did great at the mall. He really enjoyed looking at all of the people. I was wondering if he would be scared of the Easter Bunny, but he wasn’t. Actually, I think I was more afraid of the Easter Bunny than he was. No way would you see me sitting on his lap! We really had a nice day. The toughest part was trying to schedule Mitchell’s outing around eating and therapy.

We were accepted for 8-10 extra hours a week for respite care. These hours will be used during the day. I’m hoping to use a 4-hour shift during the day, once a week so I can run errands. I don’t see us using the full 8-10 hours but it will be nice to have that option if we need to. A new nursing agency will be taking these respite care hours. This agency is right in town and is affiliated with the hospital that Mitchell goes to. I will meet with the agencies coordinator tomorrow. I am excited to meet her, I’ve talked to her a number of times on the phone and she seems very nice. She seems to be very knowledgeable about home nursing care.

We will let you know how the downsizing goes. I’ll probably update Sunday or Monday and let you know how the weekend went. We hope you have a great Easter.

Take care,
Paul, Katie and Mitchell

Monday, April 10, 2006 8:37 PM CDT

Mitchell was baptized a year ago today. It is hard to believe how fast time flies. At that time Mitchell wasn’t trached. I remember he was such a good little baby at church, and then we got home and watch out! He decided that he had been quiet long enough. I am so thankful that he is such a happier baby now.

AND…am also thankful that I am a happier mother now. Why? Well it was 72 degrees today! I was getting to feel a little cooped up the last month and going a little stir crazy. Paul, Mitchell and I went on our first walk of the spring yesterday. It was still a little cool, but nice to get out. Today on the other hand, was absolutely beautiful. Mitchell and I went on 2 walks today! It is so nice being able to go for a walk and not have to worry about getting back to get him on his machine. Now all I worry about is him spitting up all over. We also got a chance to chat with the neighbors in the culd-de-sac. Ahhh, the signs of summer. They were very excited to see Mitchell and Mitchell seemed to really enjoy them.

Paul, Mitchell and I also ventured out yesterday to go to the Palm Sunday service at church. It was so nice to go to church; we both have really missed it. I think we’ll be trying to go more often now that Mitchell seems to be doing so well. Though the doctors say it is the worse place to go with a medically fragile child being there are so many people there and so many germs. We went to the 8:00 service and it wasn’t that busy. We were so happy to see one of Mitchell’s nurses from the NICU. Melissa was one of our favorites and was always so supportive up in the NICU and spiritually as well. She enjoyed seeing Mitchell and couldn’t believe how much he has grown!

Okay, I have to explain the picture of Paul. He said I’d better not put it on but I couldn’t resist. He has had an infected toe and it is “doctor’s orders” to soak it. Of course he had to use my foot spa. I think he enjoyed it even though he would never admit it!

We hope you have a great Easter weekend and enjoy the nice weather.

Take care,
Paul, Katie and Mitchell

Tuesday, April 4, 2006 8:31 AM CDT

Mitchell is doing really well. Paul and Mitchell both enjoyed “boys weekend” and I really enjoyed “girls weekend”. As you can see by the pictures, the girls had to “crash” boys weekend for a little bit. My friend Melissa hadn’t met Mitchell yet and was excited to finally meet the little guy. I did however manage to stay away for 24 hours straight. It was very refreshing. We went shopping, out to eat and then just sat around and chatted about college days and life now. I always have such a great time with the two; I always get a good laugh.

Mitchell and Paul played and watched basketball. I think that it was good for both of them to have me out of their hair for a while. Mitchell seemed to really enjoy the
”dad time”. He didn’t even crawl to me when I walked in. He could’ve at least pretended that he missed me.

Flooding…many have asked how it is this year. I’m very surprised at how bad the flooding is this year. Our house should be fine. They aren’t expecting it to be worse than 1997 and our house was fine in that flood. The river is rising faster than it has ever risen before. When I was home at noon on Saturday there was hardly any water in our backyard, by noon on Sunday it had risen about 10 feet. Usually it only rises about 2 or 3 feet per day. I put up a picture of our backyard. We are expecting the water to rise another couple feet today and it is suppose to crest tomorrow morning.

There really isn’t anything else to report about Mitchell. He is continuing to crawl all over and get into everything he can…mostly just the cat food.

Take Care,
Paul, Katie and Mitchell

Tuesday, March 28, 2006 4:18 PM CST

Not much to report this week. Mitchell was feeling a little under the weather this weekend. I think it was due to his shots he got last week. Dr. Welle had said that usually it takes a week and then they’ll get a fever. Well exactly a week and Mitchell got a fever and was a little sensitive.

Grandma Deb and Grandpa Dave came to visit this weekend. They are getting use to seeing Mitchell “under the weather” as it seems like every time they come he is feeling sick. Here’s a secret…I know they want him to be healthy, but I don’t think Grandma minds because then she gets rocking time where if he were feeling great he would be way to busy for Grandma rocking time.

Paul and I got a lot done this weekend. We took down Mitchell’s crib upstairs so now he is always sleeping in his bedroom. We had 2 cribs, one upstairs when the nurse wasn’t here and one downstairs when she was here. Mitchell just got to a point where it seemed like he wasn’t sleeping well. Since I’ve moved him to the bedroom every night, he seems to be sleeping 10 hours during the night without waking up. He was only sleeping 8 or 9 and then waking for an hour or two. The added sleep has been great for both of us.

I myself am looking forward to “girls weekend” this weekend. Our last girls weekend I was pregnant with Mitchell, so we are long overdue for one. Typically every year a couple of my college friends and I get together at someone’s house for the weekend. This year we are spending it at Sally’s house here in Fargo. It will be nice for me to get out of the house for a weekend and yet feel comfortable being right in town in case I’m needed. Paul has already informed me that he is having “boys weekend” here with Mitchell. The two of them are going to sit around and watch basketball and there are “no girls aloud”! I’m sure I’ll be a little nervous but nothing a glass of wine won’t cure (okay maybe 2). I’m not sure what the plan is but I’m sure shopping and going out to eat are in the agenda.

Please continue to pray for the families I mentioned last week. Emery, the little boy that may have cancer in his “new lungs” is going through another biopsy today to find out if it really is cancer. The CT scan doesn’t look good, the tumors seem to have grown since last week and there are more of them. This is a family that has been through so much already; please keep them in your prayers.

Take care,
Paul, Katie and Mitchell

Tuesday, March 21, 2006 10:14 PM CST

We had a great but busy weekend. Auntie KT and Jeff came to visit for the weekend. We had nursing care so it was nice to go out for a nice dinner with them. They enjoyed playing with Mitchell. Mitchell had a lot of fun playing with them and showing off his new tricks. Paul’s Aunt Donna and Cousin Maggie stopped by to see Mitchell as well. It was fun to see them. They have been trying to meet Mitchell since he was born and we always seem to miss each other. Some friends that use to live here also stopped by. They have a little girl that is almost a year older than Mitchell. Mitchell loved to watch her and also liked trying to poke her face. I think Mitchell came on a little strong, as Macy always tried to get away from him.

Dr. Welle has not talked to the ENT yet about downsizing Mitchell’s trach. I believe the ENT was out last week, so hopefully he is back this week and we can move forward on that. We got the results back from Mitchell’s sputum culture and of course it shows a few different things “growing”. We will be once again treating it with an antibiotic. I am in the process of talking to other “trach moms” about this frequent infection. I am wondering if there is a link to getting infections frequently vs. how often the trach is changed. It seems that many of them change the trachs weekly. We change Mitchell’s only once or twice a month. We may have to try and change it more often to see if that makes a difference. We have not had an antibiotic resistant infection which I have also heard is common in trached kids or kids that spend lots of time in the hospital.

Mitchell is doing very well with being off of his CPAP machine. This weekend Mitchell was only on it when he took a nap or when he went to bed. It was great! He did great most of the weekend, I had to put him back on a little earlier Sunday night as he seemed like he was working a little harder to breathe. We will continue to push Mitchell towards being off of it during awake times. He is still dry from time to time, but we try to control it by giving him saline nebs.

Recently I sent a letter to the genetic doctor we had seen shortly after Mitchell’s birth. He had never consulted about a child with the mosaic form of trisomy 13 and because of this was very interested in Mitchell. At that time we had said that we would keep him updated on Mitchell’s progress. He sent a letter back saying he was very pleased with Mitchell’s progress and was happy that we sent the yearly update. He would also like us to continue sending updates yearly.

After talking with many parents of children who have been diagnosed with trisomy 13 (mosaic or not) I have found that we have been so fortunate with our doctors. Many physicians out there do not give these children a chance. We are so lucky that we had a great team of doctors that were cautiously optimistic about Mitchell’s future. I continue to pray and thank God for the wonderful team of doctors we have found for Mitchell. They truly are a blessing. Parents are truly amazed when I talk about what our doctors have done for Mitchell.

There are a few families that I would like you to keep in your prayers. Payton, a 2 month old with T13 recently passed away. Over the last couple months I had been keeping in touch with her grandma. Please keep the family in your prayers. Also, a little boy named Emery. He has received a lung transplant and recently they have found cancer in the newly transplanted lungs. His mother is on the trach board that I visit frequently, she has also signed Mitchell's guestbook. Please keep him in your prayers as they go though testing to figure out treatment.

Many prayers,
Paul, Katie and Mitchell

Friday, March 17, 2006 8:11 AM CST

Happy St. Patrick’s Day.

We had a pretty good appointment yesterday. We went in for some more shots and actually got them this time. Mitchell needed to get 4 but we decided to only give him 2 and then we’ll come back in a few weeks for the other 2. Dr. Welle has been so wonderful about splitting up all of his shots. We are never sure how Mitchell’s body is going to react to the shots or the stress getting them.

Mitchell weighed 21 pounds and 13 ounces. I was very pleased at this weight, however Dr.Welle wasn’t so pleased. He said that Mitchell is growing like crazy in height and so his height and weight are not proportionate. After discussing the fact that Mitchell was ill most of February, he agreed that that was probably the reason for the drop. We will be trying to get him back onto the Pediasure.

We also discussed Mitchell’s trach. Dr. Welle agreed with Dr. Nagle in that Mitchell should outgrow his tracheamalacia. However, he was a bit concerned that Mitchell hasn’t been “talking” as much as he should. This could mean that his trachea isn’t getting stronger or that the trach is still just too big and he can’t get air around it. He brought up the idea of downsizing his trach. This means that we would put just a slightly smaller trach in. This would be a good test to see what exactly is happening without actually doing a procedure or taking the trach out. We are hoping that Mitchell will tolerate his speaking valve with the smaller trach. He was going to double check with Dr.Nagle on this, so I’m hoping to hear back from him today or Monday on what the plan is. I’m guessing that we have to order a couple of the trachs so it may be a couple of weeks.

Mitchell is doing pretty well off of his humidity machine. He seems to be a lot more “junky” lately so they are checking him for infection again. However, Mitchell is now up to 2-4 hours in the morning and 2-4 hours in the afternoon. This changes daily, it basically depends on how dry the house is, how he is feeling and what we have planned for the day. It is so nice to get him off of the machine. Mitchell is moving around more and more and it is getting to be dangerous keeping him “tied up” to a machine.

We will keep you updated on if and when we decide to downsize Mitchell’s trach. We are hoping for an easy transition. Wish us luck…

Take care,
Paul, Katie and Mitchell

Sunday, March 12, 2006 2:26 PM CST

Do you see anything different in my picture? Yep, my mom decided to try her hand at cutting hair. She is very tricky. I thought she was just being really nice and letting me watch my signing movie. When my movie was done, my hair was gone! I guess it’s okay, now I look more like my dad.

I was sad to see that we got more snow yesterday. Mom has been telling me that it wont be too long and we’ll be going for walks. I can’t wait! Dad said that he expects me at some baseball games this summer! That is going to be so fun!

I really don’t have a lot to say today. I just wanted to show off my new haircut. (hey at least she didn’t use a bowl) I’ve been busy terrorizing the kitty. I also love playing in the kitty food. Mom and Dad really have to watch me really close because I’m getting pretty fast at crawling. I really like to explore and get into things. Mom let me in the Tupperware cabinet yesterday. I like to empty everything in there.

Well, I sure am glad that you still like reading about me. My life is not as interesting as it use to be. I did have one of my breathing episodes on Friday. I was just playing and got mad. Sometimes I get so mad it is hard to breath. It was scary for me, but Mom helped me calm down and then I took a long nap. I don’t like having them too often, but just enough to keep Mom and Dad on their toes. I woke up from my nap and played like normal.

Take care,
Mitchell, Mom and Dad

Tuesday, March 7, 2006 9:47 PM CST

Today we had an appointment with the ENT. It was pretty uneventful, but I got a lot of questions answered. Mitchell has continued to have a little bleeding out of his trach now and then so that was checked. Dr.Nagle said that his trachea just looked a little irritated. This could be caused by a number of things but he thinks it is probably just a little more sensitive because of the dry air and then if he coughs it gets irritated. We just have to be really careful when we suction so we don’t irritate it anymore. We also talked about a timeframe for Mitchell’s trach. He said that he would be very surprised if Mitchell did not outgrow the tracheamalacia. He said the majority of children outgrow it around the age of 2. We will hold off on a bronch scope until late summer, early fall. This will tell us if Mitchell’s trachea is getting stronger. We will re-visit the idea again in 6 months. I asked about what would happen if he does not outgrow this. There is a specialist in the cities that he said he could refer us to if it came down to that. He also checked Mitchell’s ear tubes and he said that they looked good.

We have a lot of exciting news around here. Mitchell has decided that it is time to eat. I’m not really sure what the stomach flu did to him mentally, but all of a sudden Mitchell has decided to eat anything and everything. Looking at him eat you would think that we had been keeping food from him for weeks. You would NEVER guess that a couple of weeks ago he would’ve gagged and spit up all over. Mitchell has had spaghetti a couple of times. Look at the pictures! The spaghetti is VERY chunky! We have also tried bananas, saltine crackers, and small pieces of chicken. Mitchell has gotten so confident in his eating skills that he is trying to eat Mercury’s food as well. Eating has been such a struggle for us. When thinking about babies, you never think that feeding them can be so stressful. It has been very frustrating and it is nice to see that he has finally “gotten” it. Hopefully he’ll continue.

Mitchell has also started crawling on all fours. He will still belly crawl from time to time but is beginning to crawl on all fours most of the time. It is amazing how you can actually see him getting stronger week by week. He is still pulling up on EVERYTHING, he loves being on his feet. He really has to be watched closely as he gets into anything he can!

Doing well,
Paul, Katie and Mitchell

Monday, February 27, 2006 9:41 PM CST

Mitchell is feeling more like himself today. We slowly got him back on his regular 27cal formula today. Mitchell started eating like a pro. On Saturday Paul watched Mitchell while I slept a little and when I woke up he said, “I had to feed him something, he kept signing ‘eat’ ‘eat’” Poor little guy was starving from 2 days of pedialyte. He just ate a little on Saturday, a little more on Sunday and today I let him have whatever he wanted. I’m hoping that he continues eating like this so we can get that weight back on. The last time we weighed him he was 19.5 pounds, so he has lost about 2 pounds from being sick.

Mitchell is moving more and more lately and is beginning to get into everything he isn’t suppose to. I think it is time to baby proof the house. He pulls up onto anything and everything. Mitchell LOVES to stand. His physical therapist is puzzled that he cannot get into the sitting position on his own and yet he can get up on all fours, crawl about 6 feet and stand up next to anything. It really doesn’t surprise me; after Mitchell found out how to move, why sit? He really doesn’t care to do it unless he is riding his car. He is a mover; just wait until he walks!

As you can see by the pictures; anytime Mercury is in the same room, little Mitchell stalks her. Lately she has found that she is no longer safe when sitting on chairs and the couch. Mitchell thinks that she is the coolest. He laughs and smiles whenever he sees her. So far Mercury has been pretty good with him. She will bat at him now and then but deep down I think she kind of thinks it’s fun. The other day he was trying to get to her and anytime he looked away, she would bat him in the head. I found this very amusing, though it doesn’t take much now a days. Most of the time she’ll just walk away from him and hide.

We are coming up on a few more appointments. Next Tuesday we meet with the ENT (ear nose throat dr) about Mitchell’s trach. We are not expecting to get it out anytime soon, but I think we are going to revisit the idea of checking to see how his trachea is doing. I would guess that Mitchell may have a scope done within the next few months to see if his trachea is getting any stronger. We will also be doing another hearing test sometime in the near future. Technically Mitchell’s hearing should not be getting better but he is pulling out his hearing aids a lot so they just want to make sure that the settings are correct. He had some hearing loss in the middle ear, which could’ve been because of the extra fluid from having the cleft. There is a slight possibility that this part of his hearing has gotten a little better, however he would still need hearing aids, they would just change the settings a little. Again, we’ll keep you posted on the upcoming appointment with the ENT.

Take care,
Paul, Katie and Mitchell

Friday, February 24, 2006 11:16 AM CST

Mitchell has had a rough go at it this week. What started out as teething issues, fever, runny diapers and spitting up has turned into the stomach flu. Let me tell you, it isn’t a pretty sight! The poor little guy is just miserable and we just cringe at the thought of it hitting us. For some reason things like this always happen on the weekend of no nursing care. We have been fortunate that Mitchell has so far been able to weather this at home without having to go into the hospital. There are so many sick kids in the hospital right now I told his doctor we’d do anything to keep him out of there. Luckily Mitchell is taking pedialite like a champ and an occasional ½ formula-1/2 pedialite bottle. His weight is going to drop I’m guessing a couple of pounds but as long as we can keep him hydrated, I don’t care. We’ll deal with the weight later. We always have to be a little more cautious with Mitchell being he has very poor IV access. This means that if he were to need IV fluids, we have to get him in before he becomes dehydrated. As many know, this is a fine line with babies. Even though he is under the weather, Mitchell is still playing and getting around. He doesn’t have the normal spunk in him, but still wants to play. This morning when I went to relieve the nurse at 7, he was almost falling back to sleep. After rocking a few minutes he was out cold until about 9:30/10:00. I can proudly say I got to sleep in until 9:30 this morning!! Paul was suppose to go down to the cities for a coaching conference, but decided to stay home to help out with Mitchell. He was really disappointed he couldn’t go, but when Mitchell gets sick there is always a 50/50 chance he’ll end up in the hospital. It’s one of those “Mitchell things”-if Paul went, we would’ve ended up in the hospital, since he stayed home, Mitchell decided he would stay home too. Just one of the many things we have learned about how Mitchell runs the house. We hope that this will past in a day or two and then we’ll be back to “normal”.

Take care,
Paul, Katie and Mitchell

Thursday, February 16, 2006 10:32 PM CST

It has been a very busy week. Looking back it seems like I’m writing that a lot. Last weekend Mitchell had fun playing with Nana Trudy for a couple of days. He also got a visit from his Grandpa Cordes and Great-Grandma Cordes this week.

We had Mitchell’s IFSP meeting this week. This is a meeting in which all of the service providers get together and discuss Mitchell’s year as far as development. We also talk about the upcoming year and what we would like to see. We have said a number of times that we couldn’t ask for Mitchell to do any better than he already is. He has achieved so much in a year it is truly amazing. His “teachers” (physical therapy, occupational therapy, speech therapy, early childhood special education teacher and hearing teacher) all agree. They are also amazed at the progress Mitchell has made. We have set new goals for Mitchell to reach this next year. Some of these goals include; walking, becoming more verbal and using more signs.

Mitchell was with his nurse (Amanda) on Valentines Day night. They had a good time finger painting a Valentines Day card for us. Meanwhile Paul and I went out for supper. We had a very nice Valentines Day.

Mitchell had a birthday party to go to on Tuesday. Our friend’s daughter (Janie) turned 1. It was fun getting Mitchell out and he seemed to enjoy it. Though it is a hassle to get him out, it is well worth it. I personally love getting out of the house to see friends, but also love being able to bring him with.

Tonight we had the science department over for supper. (Or like I say, The Science Geeks) Mitchell’s buddy Max was sick tonight so he couldn’t come but he found another little buddy Jacob. Jacob is 5 months old and he loved laughing at Mitchell. It’s always fun to see little kids interacting. Mitchell wasn’t really sure what to think as he is usually the “little guy” and this time he was the “big kid”. Jacob’s mom also stays at home and there are plans to get together for a play date.

Mitchell has been feeling better but yet still is on and off of oxygen at night. There really seems to be no rhyme or reason as to why some nights he needs it and some he doesn’t. I do think that the sudden change in temperature has been tough on him. The house is suddenly dry again and this makes his trach very dry. Tomorrow we are supposed to go to the audiologist to get a new ear mold. We are planning on canceling the appointment as the high is only suppose to be -10 without wind-chill and with wind-chill I believe it is suppose to be -20 or so. It is hard to explain what this does to Mitchell-but just think about how your nose feels when you breath in that cold air and then think about what it would feel like if that cold air was going directly to your lungs without being heated by your nose. I guess I just know I have a hard time breathing when it is this cold. I can’t imagine that being very good for someone with breathing issues already.

This is getting to be a long one…Mitchell crawled about 5 feet on all fours today. He’s getting close. He also is beginning to sign eat and all done. There seem to be new things weekly. He’s a hard working little guy that’s for sure.

Stay warm,
Paul, Katie and Mitchell

Thursday, February 9, 2006 2:03 PM CST

Today we had another great doctor’s appointment. Mitchell still has his cold and still on antibiotics so he didn’t get his shots. So we had an “ouch-less” day at the clinic. Mitchell’s weight was 21 ½ pounds. Dr. Welle said that we could send back the feeding pump! I’ve held onto it this month just in case we needed to put him back on tube feeding. We will still be monitoring his weight closely but he was very impressed with how he looked. He said that each time he sees Mitchell he seems to look better and better. We will attempt the shots again in a month in hopes that Mitchell is back feeling 100 percent.

Yesterday Mitchell pulled himself up to standing next to the couch without help from his car. It looks like his motivation is either the kitty or the laptop computer. It is amazing what he has accomplished within a week while being sick. It is fun to see daily progress in development.

We are just patiently waiting for Mitchell to get over this nasty cold. He has been on and off of oxygen. There really seems to be no rhyme or reason on which nights he needs it. He can go 2 nights without and then all of a sudden need it. We are hoping by next week he will not need it at all. He hasn’t needed it during the day since Sunday.

Once again I got a “check up” call from the insurance. It’s funny-some people go years without ever talking to their insurance company. Ours seem to check in monthly. I suppose they like to keep close tabs on the spendy clients. I am always very careful about what we talk about, as I know they will use anything against us. It’s sad that the world has gotten so un-trustworthy.

So here’s to another great doctor’s appointment. It feels good being able to type that…

Take care,
Paul, Katie and Mitchell

Sunday, February 5, 2006 10:58 PM CST

We’ve been meaning to write, we’ve just had a busy week. Mitchell has had a cold this past week. It just seems he can’t kick it. Dr. Welle decided that he wanted to see him to make sure that it wasn’t the start of RSV (a serious respiratory illness) or pneumonia. Mitchell’s chest x-ray looked great but his sputum culture came back with signs of infection. Mitchell is now on a pretty tough antibiotic. It has been hard on his tummy, so we’ll see if he can tolerate it. The last few nights he has needed a little oxygen to keep his saturations up. Today he actually needed it during the day as well. This is the first time he has had to be on oxygen during the day at home. Mitchell was just kind of blah today.

Grandma Deb and Grandpa Dave had a fun time playing with Mitchell this weekend. Even though Mitchell felt under the weather, he is always in the mood to play. They couldn’t believe how much he has grown since the last time they saw him. They also couldn’t believe how much stronger he is getting.

Even though Mitchell had a blah day, he still managed to accomplish a “1st”. Mitchell pulled himself up to stand next to the ottoman. Of course he was trying to get poor Mercury who was sleeping soundly on the chair. It was quite the process as Mitchell tried to figure out how he was going to get that darn kitty. I enjoyed watching it.

We are hoping that this week brings rest and recovery for Mitchell as he tries to kick this infection. I’m hoping that the antibiotics will kick in soon and this will help him feel a little better. We have an appointment on Thursday with Dr.Welle for some more 12- month shots. I doubt that he will be getting these this week being they are his 1st set of live virus shots (chicken pox). He really needs to be feeling 100 percent in order to get these.

Take Care,
Paul, Katie and Mitchell

Thursday, January 26, 2006 2:51 PM CST

We had another good week of appointments. It’s a great way to start the New Year. Mitchell’s hearing aid appointment went well. I guess it is pretty routine-we just go in, get glue/gum stuff put in his ear, let it harden take it out and we’re done…10 days later his new molds are ready. Oh, I did manage to lose a blanket in the trip. I guess with all of the equipment I bring I’m glad it was a blanket and not Mitchell, the suction machine or the oxygen.

Today we went to the eye doctor for a 1-year follow up visit. There is something about holding Mitchell down and the nurse prying his eye open that just makes me cringe. But, Mitchell came out a trooper and though he put up a pretty good fight, he kept breathing. We gave him a breathing break here and there, but overall he did much better than I had expected. Once again we are happy to see that Mitchell does not have glaucoma. The eye doctor ensured us that glaucoma was very rare in babies. Once again Paul and I looked at each other and laughed. Rare…it isn’t a word we use around Mitchell because if something is rare, he may just have it. We did discover that Mitchell is a bit far-sited. However, I guess this is quite common among children his age. At this point it is just something to watch-no glasses are needed. Could you imagine trying to keep glasses on a 1-year old?

It’s so great to have appointments with good news. We have been so fortunate that Mitchell has been so healthy. I have to say the first 6 months were tough, but it seems like every day is getting a little easier. Now I am starting to get tired for “normal” reasons…a moving 1-year old. Though some days it is hard to keep up with his energy level, I stop and thank God that I have such an active little boy to keep up with. I sure am hoping that this is our year for good news…we are starting out down the right path.

More good news,
Paul, Katie and Mitchell

Sunday, January 22, 2006 8:27 PM CST

We met with the dietician on Thursday and it went well. She said that she thought Mitchell looked good. He has some fat stores that he would be able to “tap into” if he were to get sick enough to loose weight. However, he could use a little more. We talked about using a higher calorie formula similar to pediasure. Nicole had to talk to Mitchell’s doctor before we can switch him. At this point it looks like Mitchell is gaining weight at a normal rate for a 1-year old. We will be adding a few extra calories to his solids by adding just a little canola oil. This will give him some “good fat”. I thought this was a good idea, much better than adding butter.

Mitchell had his pictures taken on Saturday. It was fun but it was a lot of work to get him to smile. I think he decided he was camera shy. However, we got a few cute ones. If you’d like to see them you can look on this website-www.expressionsbyashton.com
Click on ORDER and then Katie Craig and they should pop up.

Mitchell continues to have a bit of a cold. He has done well with keeping his oxygen levels up but has needed a little oxygen when he sleeps at night. He is fine, but the extra oxygen is just helping him sleep a little sounder. During the day he has been doing great.

Once again we have more appointments this week. We will be getting new ear molds for Mitchell’s hearing aids on Monday. On Thursday we will be seeing the eye doctor for Mitchell’s 1-year follow up appointment. We will let you know how it goes.

Take care,
Paul, Katie and Mitchell

Tuesday, January 17, 2006 9:58 AM CST

We continue to work hard on getting Mitchell to maintain his weight. Since we have taken the NG tube out his weight has ranged anywhere from 19.5 pounds to 21 pounds. This morning he weighed 21 pounds. We have an appointment with the nutritionist tomorrow. We had originally been scheduled to meet with one in February, but I talked to the nutritionist that sees him in the PICU and she has agreed to meet with us tomorrow. I think that she would be the best for us being she already knows Mitchell from the hospital. I just don’t think we really need to go through meeting another “new” professional. We have really grown to value her opinion as she has been through many of the same struggles with her son. There is always a connection with parents who have had a child with a trach. I’m hoping she can give us some tips on getting Mitchell on a good eating schedule. It seems like that is all we do around here.

Mitchell is moving faster and faster everyday with his crawling. He is still doing the “army crawl” but you can see he is thinking about crawling on all fours. We are starting to think about “baby proofing” the house as I know once he starts really crawling…there will be no stopping him. He is getting better at standing next to things as well. Yesterday he played with very little assistance next to the couch.

Take Care,
Paul, Katie and Mitchell

Friday, January 13, 2006 2:34 PM CST

Mitchell got an A+ on his swallow study today. Paul and I were able to be in the room during the study and I found it fascinating. It was neat to see the mechanics of how he eats and then to watch the food go down. The swallow study is basically the same as the upper GI in that he drinks barium and they x-ray it going down. However, they only watched it go from his mouth and then past the trachea. Mitchell was such a good patient; he even signed “more” for them. I’m sure they don’t get too many people asking for more barium.

We also had a recheck with the pulmonologist. He said Mitchell sounds much better and he is glad the test went well. He thought that maybe the “junkiness” was due to his previous cold and staph in the trach. Mitchell seems to be getting back to normal as far as secretions go.

With the “go ahead” from the swallow study, we will continue to move forward with feedings. I am hoping to get him into the dietician soon so we can get Mitchell on a plan with goals. He seems to be getting better and better with solids. Thanks for the prayers; we are so lucky to have so many friends and family praying for Mitchell.

Great News,
Paul, Katie and Mitchell

Thursday, January 12, 2006 10:45 AM CST

I think this is the 1st time that I called Dr.Welle’s office and a nurse called back instead of him. I find that encouraging.

We called in Mitchell’s weight today 20 ½ pounds. Our scale only goes in ½ pounds so we actually do not know exactly how close to 21 he is. I also asked for a dietician recommendation. I think it will be nice to get an overall glance at how Mitchell is doing and I am also hoping she can set some goals for us. I’m looking primarily at his nutrition and how he is going to get it whether mainly by formula still or trying to switch more to solids. The nurse called back after Dr Welle had read the note (usually he calls) and said the weight looked good and that he thought the referral was a good idea.

Mitchell was our “star” eater yesterday. He took 6 ounces everytime he ate and kept it all down. He also took his solids 3 times a day.

Though we are so pleased that we have a pediatrician that cares enough to take the time to call us, it is great when he doesn’t have to! We are hoping for the same luck tomorrow. We could use a few extra prayers that the swallow study goes well.

Wish us luck,
Paul, Katie and Mitchell

Monday, January 9, 2006 9:22 PM CST

Well we write today with all sorts of news as it is a very busy week….

We call in Mitchell’s weight on Thursday. This mornings weight was down. This was a very big bummer. However I have talked to many parents that have been in the same position and therefore I have a plan. (well, sort of) We will be waking Mitchell up in the night so he can get 1 more feeding. I have also been told that avocados are excellent for babies as they have a lot of fat and calories along with many nutrients. Regardless of Mitchell’s weight on Thursday we will be asking for a referral to see a dietician. We agree that Mitchell needs to be gaining weight and maintaining. We just need to decide how he is going to do that and what is realistic for him. In my heart I know that if Mitchell is healthy, he can do this on his own without a tube. This is like when he was in the NICU and they talked about putting a stomach tube in because he couldn’t get it. With Mitchell, it isn’t HIM that has to get it. WE have to just figure out how to make it possible for him. Wish us luck!

Mitchell made a huge step towards the right direction today. During supper Mitchell decided to take his first chomp of food. He is able to eat smooth babyfood like a champ and also doesn’t mind mac and cheese now and then. BUT, tonight Mitchell actually took a piece of avocado and put it in his mouth and ate it…a couple of times. This probably sounds trivial for some, but it is a step that brought tears to my eyes. (And loud cheers from both Mom and Dad) Mitchell typically puts EVERYTHING in his mouth himself except food. We have tried getting him to bring food to his mouth and he refuses. I hope this is a sign of good eating to come!

We got a call from the speech department today and Mitchell’s swallow study will be done on Friday. Again, I really feel that he isn’t aspirating. After the swallow study we will have a follow up visit with the pulmonologist. I’m sure he just wants to check and see if Mitchell sounds the same as he did last week. He has been on antibiotics for staph in his trach so I think he will sound better by then.

Please pray for Mitchell this week. We pray that he continues to eat as well as he is and pray that his test comes back with good news. Hopefully we will know something Friday, I sure pray that my feelings are correct or there is going to be one sad mama this weekend. We’ll try to post either Friday or during the weekend.

Wish us luck,
Paul, Katie and Mitchell

Saturday, January 7, 2006 4:56 PM CST

I have been meaning to write, but have just been busy…

Our appointment with the pulmonologist didn’t go as well as we had hoped it would. The doctor didn’t like the way Mitchell’s lungs sounded and thought that he is aspirating when he eats. We have been through this before when Mitchell was in the NICU and he did great on the swallow study. However, with his trach now in place, it could have changed the way he is swallowing and therefore causing him to aspirate. A week ago Mitchell didn’t sound as “junkie” as he does now. He usually has good weeks and bad weeks and unfortunately we had to go to the pulmonologist during a “junkie” day. We will be taking Mitchell in for another swallow study. This is where they let Mitchell eat his formula along with a little barium and they use an x-ray type video to watch him swallow. This is to make sure that he is able to protect his airway when eating. They will give him different consistencies to see if one may cause aspiration while the other may not.

When I talked to Mitchell’s pediatrician about this, he said to try and put food coloring in Mitchell’s bottles and then suction him to see if we get any out. We have done this numerous times and we’ve never suctioned out any color. He will still have the swallow study because he could just be aspirating very small particles.

We had a pretty scary night on Thursday night. Mitchell had a reaction to albuteral. This is a stimulant we give him that is suppose to open his bronchials. (Stimulants typically raise heart rates) He had a lot of high heart rate alarms along with his saturation monitor going off. Mitchell seemed to be fine, but his heart rate dangerously high. It didn’t stay high for very long but it did go up and down for a good amount of time. I talked to the on-call pediatrician and she told me to watch him closely. We were lucky that his heart rate came down within a half an hour or we would’ve been in the ER. I talked to his pediatrician Friday morning and he was disappointed we didn’t bring him in that night. I think we probably should have but being I knew the reason and the on-call doctor said to wait. I probably should've followed my own instincts and just brought him in but I knew that waking him up and getting him there would raise it higher. It was best for him just to rest.

Mitchell had a great night last night as he had no apnea alarms. However, he did wake up with a runny nose. I am thinking that this is why he has been so junkie lately. He seems to be acting normal and eating great so hopefully it won’t be too bad of a cold.

Great News: We have found another nurse. Hellen will be starting soon. She works in the NICU at MeritCare and took care of Mitchell when he was in there. Hellen happened to be one of our favorite nurses and so we were so pleased that she called about the job. We also heard from the insurance company about nursing coverage for 2006. They are allowing us for the continued nursing care, no questions asked. This is very relieving.

This got to be a long one. Mitchell overall is still doing great. He is getting stronger everyday. My plan is to get his picture taken professionally next week depending on how his cold is. We may end up doing it the next week. We’ll let you know when we get the swallow study done. I am confident that Mitchell will do well on it. However, a few prayers may help.

Pray for another positive test,
Paul, Katie and Mitchell

Tuesday, January 3, 2006 2:05 PM CST

We ventured out to the orthopedic doctor today. Dr. Welle wanted him to look at Mitchell’s hips. We got great news today, Mitchell’s hips look great. The doctor said that they are formed a little differently but that he shouldn’t have problems with them. I have learned that when it comes to Mitchell “different” isn’t always something you ask questions about…just take the news that they are going to be fine. I also had him look at Mitchell’s feet. When he was born we were told that he seemed to have “rocker bottom” feet. I wasn’t sure what this meant and thought that his feet looked “normal’. The doctor agreed that he thought that Mitchell had a great arch and therefore didn’t have the rocker bottom feet.

It was the first time I went out and about with Mitchell by myself. I guess we went to Dr. Lamb’s office, but that was just a very quick trip. So, today we went to the clinic on our own AND Kmart. Mitchell did very well. The last time we went to Kmart he stopped breathing so we had a big talk in the car before going in. Mitchell did great in Kmart. It was just a very quick trip for toothpaste, but I think that he would’ve done fine if we would’ve been there longer. The biggest issue is all of the equipment. We have another appointment with Dr.Welle in 5 weeks and we’ll talk about this issue. As Mitchell gets older and more mobile I’d like to find the easiest way to get him out. It is important for him to know there is more to the world than our house.

We venture out again on Thursday. We will be seeing Mitchell’s pulmonologist. We’ll let you know how the appointment goes.

Hope you are all recovering from all of the holiday festivities.
Paul, Katie and Mitchell

Sunday, January 1, 2006 1:45 PM CST

Happy New Year everyone! Mom and Dad FINALLY let me write an entry.

I love being at home but I have to say, there was much more excitement at midnight last year. Last year I celebrated with all of the little babies in the NICU. (humm…wonder where that cute girl triplet is?) This year I rang in the New Year with my Mom and Dad at home. Oh, let me re-phrase that. We all stayed up until 10:30 and then crashed. So I guess we really didn’t “ring in the New Year”.

It is my goal to make 2006 great! One big goal is to have it surgery free! Oh, and I’d love to get out once in awhile with Mom and Dad. I really loved going to church at Christmas time and am begging them to take me out more often. Maybe I can go see my buddies Max and Janie instead of them having to always come over here. I’m excited to see them again now that I don’t have to worry about them pulling at my nose tube.

Mom and dad brought me to the doctor the other day. They poked me a couple times, but I was a big boy and kept breathing. (I just cried a little) My doctor put me on some new milk and I love it. My mom said that I ate 6 more ounces than I usually do. I get full, but it is so tasty. There are even different flavors: vanilla, strawberry, banana cream, chocolate and many more. So far mom has only let me try vanilla, strawberry and banana cream. (Banana cream isn’t my favorite) I like the strawberry but they make me promise to keep it down because if I spit it up it makes a big mess! (Remember we have white carpet) That is why Mom said chocolate wouldn’t be a good choice. But, I heard Mom talking to Dad today about letting me try it. I can’t wait. At Christmas time Mom put a dab of chocolate on my strawberry and banana and I loved it. She said that she thinks I got her sweet tooth.

I hope everyone has a wonderful New Year. I’m going to get this crawling and walking down and then watch out Mom and Dad, you thought 2005 was work!

Happy New Year,
Mitchell, Mom and Dad

Thursday, December 29, 2005 3:38 PM CST

Look in the picture…do you notice anything different? It’s like a search and find.

We had a pretty good 12-month check-up today. We spent over an hour and a half at the clinic. One thing we love about Dr. Welle is that he takes his time with Mitchell to be sure that he doesn’t miss anything. Now lets see if we can remember everything…

If you haven’t figured out what is different-here it is-we are TUBE FREE! After negotiations with Dr Welle, we got the “go ahead” to try getting Mitchell to take all of his nutrition without night feedings. We will call in Mitchell’s weight in 2 weeks to make sure he isn’t losing. If he is-tube goes back in. If he is gaining-tube stays out. Go Mitchell! He also switched Mitchell to Pediasure; this is formula for big kids. (One step closer to Milk) The Pediasure has a few more calories per ounce and hopefully that will help him get all of the calories he needs. I think that is all in the food department.
MRI-we again went over the results of the MRI. For some reason it is always reassuring to actually see the neurologists report in writing instead of just by mouth. The report stated that Mitchell’s brain showed no abnormalities and looked as it should for his age. I asked about a lump on the back of Mitchell’s head that I have been concerned about. Dr. Welle thought that the lump was just how Mitchell’s head is formed-and reassured me that anything “abnormal” would’ve been caught on the MRI as they are very accurate.
Shots went well. The nurse accidentally gave him an extra flu shot not realizing that he had already had 2 of them. The 1st one wasn’t in the records because it was done at the hospital. I was a little upset about this-but Dr. Welle came in and actually said it was a very good mistake to make. 1 flu shot only gives you about 20rotection from the flu, 2 gives you 50and 3 about 70They usually don’t give 3 just because people don’t want to go through the hassle. He said that he thought it was great that Mitchell got 3 of them hoping that this will give us a better shot at not getting the flu. Mitchell did well with the shots, a little crying-but he continued to breathe. He also got blood taken. Paul and I were a little pessimistic when the lab-tech came in and tied his arm off to take blood. You could see absolutely NO veins. I said, “I’m not sure if you are going to be able to get anything. Veins are hard to find in Mitchell.” 1st try-Paul and both looked at her and said, “Nice job! You should work in the OR.” Again, Mitchell continued to breathe, just cried a little. Over all a very good trip to the doctor.

Christmas-We had a fabulous Christmas. My Mom, Dad, Brother and Sister-in-law came on Friday. We had a great time; Mom made our traditional prime rib dinner and it was great. Beckett and Jamie enjoyed getting plenty of “Mitchell” time. (They live in Seattle) Paul’s family came up on Sunday; Joe (Paul’s brother) came home from Japan. It was the 1st time he met Mitchell. They had a great time playing. We had a great time visiting. It was a very busy weekend for Mitchell, but he had a great time with all that comes with Christmas.

Take Care,
Paul, Katie and Mitchell

Sunday, December 25, 2005 5:09 PM CST

Merry Christmas Everyone!

Love,
Paul, Katie and Mitchell

Tuesday, December 20, 2005 9:21 PM CST

Things are going well here. We are really starting to push Mitchell with getting off of his humidity machine and onto the HME more. He is doing great with this. Mitchell also started inching FORWARD. He has been crawling backwards and rolling everywhere, but yesterday he finally took a few creeps forward. (Army style) I’m guessing by the end of the week he will be doing a little more and also guessing that it wont take long for him to figure out crawling.

Like everyone else, we will probably be pretty busy this week and weekend. I thought we’d post our Christmas Card Letter. We sent out a few, but not as many as we would’ve liked. But, this year I thought we could get away with putting it on the website. Here is also the picture we sent. Isn’t he cute….

Dear Friends and Family,

What a difference a year makes! Though last year we were blessed with an early Christmas gift, last holiday season was a tough one for our family. Our little Mitchell John’s birth on the 16th came with so many questions and not many answers. As the new year went on, new challenges came into our lives and we decided to take them one day at a time, which brings us to this holiday season.

Mitchell currently is doing very well. His social calendar is very full. He gets physical therapy twice a week, seen by his hearing teacher once a week, speech therapy once a week and his early childhood special education teacher comes out twice a week. Mitchell enjoys every teacher that comes out to work with him. He is a happy little boy that LOVES to explore, learn and is very eager to please. Mitchell is constantly shocking the medical world with his progress. Every day seems like it is Christmas as every milestone he reaches is such a big success for him and us. Mitchell has mastered sitting up and is now working on crawling forward and getting into the sitting position by himself. Though he is a little behind, we have no doubts that he will reach these milestones soon. Mitchell seems to be a very wise little boy, sometimes a little too wise for his own good. A year ago I don’t know if we would’ve believed it if someone told us this is where we’d be at with Mitchell. Though we never lost hope or faith, statistics are scary and I love when our little boy beats the odds and shows that nobody can predict what he is going to do in life, only God knows Mitchell’s plan. We have learned so much from Mitchell about not only being parents but about life. We have learned that nothing in life is guaranteed and to enjoy every blessing that comes your way.

Paul continues to enjoy teaching 9th grade science. The Blues Legion team went 25-16 this summer. He had a great time coaching but hoped that we could be in the stands cheering the team on…maybe this next summer. This was Paul’s 2nd year coaching the linebackers on the varsity football team. The Spuds had a good season ending with a 6-4 record. Paul has also been very busy being a dad. He has worked very hard at learning the ins and outs of taking care of a baby as well as the added bonus of learning Mitchell’s medical needs. He is thoroughly enjoying being a dad. At the end of the school year last year he received recognition from the school for doing such a great job with juggling our personal struggles with Mitchell’s health along with still being a dedicated teacher. He did a great job at staying focused even though it was so hard for him to go back to work after all that was going on. I can honestly say I don’t think I could’ve been able to balance the two. He is both a great dad and teacher!

As for me, I decided to resign my position with the truancy program so I could stay at home with Mitchell. Though I miss being around everyone at work, I do not regret my decision to stay at home. As you can expect, most of my time is dedicated to Mitchell. I wouldn’t have it any other way. I try to get a little “me” time while Mitchell is sleeping or when Paul gets home. I spend that time scrap booking, on the computer, using our new elliptical machine, running errands or just laying around. I have tried to make a point of having 1 day a month where I do something fun for myself like getting a massage or facial. Those are great days! Paul and I usually get out together once a week when Mitchell’s nurse comes. It is nice to still be able to have “date” nights.

We hope that you have a wonderful holiday season. We thank all of you for being so supportive throughout this last year. We couldn’t have asked for a more supportive group of friends and family. Many of you keep up with Mitchell’s progress through his website. If you haven’t checked it out, here is his site: www.caringbridge.org/mn/mitchelljohncragg

Happy Holidays!
Paul, Katie and Mitchell

Saturday, December 17, 2005 11:57 AM CST

Everyone had a great time at Mitchell’s party last night. Let me tell you….it was kid central. It was fun to see Mitchell around so many kids.

We had some pizza and pop. And then we did the traditional Happy Birthday song with Mitchell’s hands in his cake. Then we gave him a piece and you can see by the picture, he liked to play with it. Mitchell really enjoyed getting his hands dirty. We even tried to get him to taste a little of the cake. I was happy to see that he didn’t gag. He has been having problems with any crumbs or chunks when it comes to solids, but he didn’t seem to mind the cake. It was nice to see. Lastly we opened gifts, Mitchell got so many nice things. All the kids loved to see and play with his new toys.

Paul and I would like to thank everyone for coming over for Mitchell’s 1st birthday. It was such a big day for all of us, and such an achievement. We loved sharing it with friends and family. This is always such a busy time of year and we really appreciate you taking the time to help us celebrate this special day. Great-Grandma and Great-Grandpa; thanks especially for coming!! We loved seeing you!

A great celebration,
Paul, Katie and Mitchell

Thursday, December 15, 2005 9:20 PM CST

Paul said when he got home today, “last year at this time you were calling me to come to the hospital.” Can you believe it has been a year?! I told him….a year ago I weighed over 200 pounds! We both got a good laugh.

Tomorrow is a big day for our family. Only 18% of babies born with trisomy 13 make it to their 1st birthday. Mitchell has beaten the odds. (Maybe we should buy him a lottery ticket for his birthday) Though we never lost hope or faith, we knew it would be a long road. We made it! I’m sure there are going to be more bumps in the road, but at least we have the first year under our belt. And I can honestly say the happy times outweigh the rough times…just look at our happy little boy and you can see that.

Tomorrow we’re planning a birthday party for Mitchell. Close friends from Moorhead will come along with Grandpas and Grandmas. Mitchell will have his little buddys here as well. We are planning to have a little pizza party along with cake. We’ll see how Mitchell does with attempting to eat cake. I will get pictures put on the website on Saturday.

Party Time,
Paul, Katie and Mitchell

Monday, December 12, 2005 9:29 PM CST

We would like to start this week with a BIG thank you. Friday is Mitchell’s 1 year Birthday…a very special day for all of us. We have spent the last couple days talking about this past year. Looking back it is amazing that we have made it this far. (and are still sane) We have so many people to thank.

We are both so thankful for all of the nursing staff and doctors both in the NICU, PICU and also Dr. Welle (Mitchell’s ped.). We have read many stories of medical staff basically “throwing in the towel” when a child is diagnosed with trisomy 13. This is an experience we have NEVER had. Though our doctors have been honest, we have always thought they have been optimistic. We thank them for treating Mitchell like any other child.

We are also so thankful for our parents. We know that this year has been just as hard on them as it has been on us. We know that it is so hard for you to be so far. But know that even though it seems like you are so far we always know you are here for us and that you would drop anything to help us out. Your support has meant the world to us.

Our friends from work…you have been more supportive than we could’ve ever thought. I especially thank those at the high school for being so supportive when Paul had to go back to teaching. My friends from work…thanks for being so supportive with my decision to resign my position AND for getting me out for chips and margaritas.

We couldn’t thank our family and friends enough for all of the support we have gotten. It has been so nice getting visits from you and encouraging calls. We know it isn’t always the most exciting place to hang out, but thanks for the company.

Mitchell's teachers. Thank you for helping him be the best he can be.

Mitchell, thanks for being the best son anyone could ask for. Despite your medical challenges, you are the happiest little boy we know. Your attitude makes our job of being parents easy.

We thank God daily. We thank him for everyone that has supported us and also for giving us such a wonderful little boy. Though at the beginning there were many questions of “why?” As this year comes to an end, we no longer find ourselves asking that question. We feel truly blessed to have such an amazing little boy to call our son. He has accomplished so much in one year and we thank God for giving him the strength to do so.

We have a lot to celebrate this week.

Thank you,
Paul and Katie

Friday, December 9, 2005 10:19 PM CST

Dr. Welle called tonight and said that Mitchell’s MRI was perfect! This was great news. I have to say, I think that this was the most nervous I’ve been for a test result. I really just did not have a good feeling about the results and I’m happy to say that this time my “gut feeling” was wrong. He also said that each time he sees Mitchell he is so impressed with his progress and thinks that he is doing great. This was so nice to hear. We always think he is doing so well, but it is reassuring to hear it from a doctor, especially one that we respect so much.

FYI-for those who just caught this message; we posted a message earlier today that talks about Mitchell’s day and test.

More prayers answered,
Paul, Katie and Mitchell

Friday, December 9, 2005 5:08 PM CST

We took Mitchell in for his MRI today. Everyone thought he looked really good, but we’ll hopefully have the results of the test by the weekend. I asked Mitchell’s doctor if he was expecting to find something on the MRI and he didn’t think so. He said that a lot of times central apnea is unexplainable as to why it happens.

Dr. Welle thought Mitchell looked good overall. He weighed 20 pounds 5 ounces, which means he continues to gain. I was really hoping we could get rid of the NG tube but looks like we are going to have to keep it awhile longer. We are bumping him down again as far as night feedings, so he will be getting only 4 hours instead of 6. His doctor is hoping that Mitchell will be NG free in 2006. I think it is a good New Year resolution for Mitchell.

With Mtichell’s recent interest in making sounds, we talked to his doctor about starting to use a speaking valve. This is a device you put on his trach (similar to the HME), it allows him to breath in but when he exhales, the Passy (speaking valve) will plug his trach. This forces Mitchell to exhale pushing the air past the small opening around the trach and out his mouth. This will allow him to get more vocalization. We will use this off and on just like we would the HME. We will have to monitor him closely to make sure he can get the air through.

We will be setting up appointments with the eye doctor for a 1 year re-check in January. We also will be setting up an appointment with the pulmonologist to see what he thinks about Mitchell’s progress. Lastly, we will be also seeing a pediatric orthopedist. He will be taking a look at Mitchell’s hips to make sure there isn’t anything more we need to be doing.

We brought Mitchell home this afternoon. He has been pretty sleepy but has done well recovering from the sedation. They decided that they didn’t need to put an IV into Mitchell. Instead they used a light oral sedation medication. He has had this medication before and had done well with it. We are still hoping to get results from the test possibly tonight. If we do, I will post again tonight or tomorrow morning. I know many of you are just as anxious as we are to hear the results of the MRI. Thank you for the added prayers today. It is always so nice to know we have such good friends and family out there praying for our special little boy. Your prayers have been heard and answered a number of times.

Take Care,
Paul, Katie and Mitchell

Thursday, December 1, 2005 6:03 PM CST

I can hardly believe it is already December! Where does the time go?

I talked to Mitchell’s doctor this week and we both agree that getting an MRI done on Mitchell’s brain is the right thing. I cringed when he said he wanted it done before his birthday. For my own selfish reasons I wanted it done after Christmas in fear that they will find something that would prevent Mitchell from being home for his Birthday or Christmas. But, I know that getting it done as soon as possible is the best thing for Mitchell. There is no room for selfishness when it comes to a child that has medical needs. All we can do now is just pray that the MRI will come back with nothing abnormal. Mitchell’s MRI is scheduled for the morning of December 9th. Mitchell will have to be sedated for this test and therefore will need an IV put in. I’m not really sure what the plan is for this, but it should be interesting to say the least.

Mitchell is getting closer than ever to mastering sitting up. He can sit for a long time as long as he has something to rest on. Without his block to rest on, he is able to sit for about 10 seconds and sometimes longer. I’m sure he will master this soon.

Mitchell continues to “talk”. All of us are shocked at the volume Mitchell is able to get without plugging his trach. Usually someone with a trach is only able to produce that volume by plugging their trach either with their hand or a speaking valve. We are not sure how he is doing it, but he doesn’t seem to be in any distress so I’m going to enjoy hearing him. It is so fun to finally hear him laugh. A sound I thought I wouldn’t get to hear for a long time. Yesterday Mitchell made sound with his mouth closed. This made an mmm sound…. you guessed it, now I’m working on MOM! So more was his first sign, I’m going to make it my goal to get him to say mom as his first verbal word. We are still working on signing as much as we can. At this time Mitchell recognizes signs, but still can only sign “more”. We’ll keep working!

Take care,
Paul, Katie and Mitchell

Tuesday, November 29, 2005 6:07 PM CST

Well we held out as long as we could but the snow just couldn’t hold out anymore. And boy did we get hit. Many of you have been calling or e-mailing to make sure we’re all right. Thanks for your concern. Paul has had a little extension to his Thanksgiving break. They have called off school both yesterday and today. It started with an afternoon and evening of rain and freezing rain on Sunday. By the time we woke up on Monday the roads looked like a big ice rink. Then came the snow and the wind…. 5 inches with blizzard conditions. There have been power outages all over but we have been lucky so far and have not lost power. The news said this morning that they might have to voluntarily shut off power for a while in order to protect the system. We are on a medical list that says we have a young child that needs electricity for medical equipment, so I’m hoping that they take that in consideration. Paul went out and bought a small generator in case we would lose power for longer than an hour. At least we would be able to hook up Mitchell’s heater and air compressor. So the 3 of us are just hanging out enjoying the extra days off. The Sheriff’s Department shut down ALL roads in our county last night. I don’t know when the last time that has happened. I’m guessing that school will resume tomorrow as the plows get out today and get the roads cleared and salted.

Thanksgiving; we had a nice Thanksgiving dinner with Paul’s mom and dad complete with turkey, stuffing, mashed potatoes and pumpkin pie. Mitchell enjoyed some mashed potatoes, but preferred his puree sweet potatoes. He also got to sample some cranberries, which were a little tart. We had a very nice day.

Mitchell is doing well. Dr. Welle and I are in contact as we try to get a date scheduled for Mitchell’s MRI. He would like to see it done before Mitchell’s birthday. Can you believe Mitchell will be 1 year old in a few weeks?!

Take care,
Paul, Katie and Mitchell

Monday, November 21, 2005 3:46 PM CST

Our visit to Dr. Lamb’s office today was pretty uneventful. (which is always good) He thought that Mitchell’s lip and palate were healing nicely. We will not have another appointment until spring.

Mitchell seems to be doing great. With all of his appointments lately, I forgot to tell you the great news…Mitchell is now signing “more”. He was trying to earlier but just couldn’t get his hands together and now he can. It actually looks pretty close to the actual ASL sign. We are all excited for Mitchell to start communicating! However, now he wants more of EVERYTHING, “more” food, “more” hugs, “more” tickling, “more” jumping. Mitchell is also working very hard at sitting up. Well I guess we’re working hard at it…Mitchell seems to care less if he sits or not. He is more of a go, go, go type kid. There is no time to sit. He can crawl backwards and rolls everywhere he needs to. It is getting harder and harder to keep him in one area. I think he is working harder on crawlimg forward than he is sitting up.

I am not sure if we’ll write again this week. We hope everyone has a great Thanksgiving. Our family has so much to be thankful for this year. We are blessed to have such great support from our friends and family. Once again, we could never thank you enough!

Thanks!
Paul, Katie and Mitchell

Tuesday, November 15, 2005 6:12 PM CST

Mitchell went to the doctor today to get his 2nd flu shot. He really did well with his shot, just a quick frown and then back smiling again! What a trooper. Mitchell “weighed in” at just over 20 pounds. (with clothes on) Dr. Welle was very pleased with his weight, meaning we are on our way to getting rid of that tube! We will drop Mitchell’s night feedings from 8 hours to 6 hours. Hopefully we’ll get that tube out by Christmas! We also talked about Mitchell’s breathing episodes. We had a video taped of Mitchell having an episode while getting his NG tube inserted. We watched it with Dr.Welle and he thought that it looked like a typical breath holding episode. This does not mean that he is actually holding his breath on purpose. It means that when he gets stressed or over stimulated, something happens neurologically that is causing him to be unable to breathe. This is something that Mitchell should outgrow within time. We are just going to have to know that this can happen and make sure that everyone who takes care of him are well prepared to help him through it. We also talked about Mitchell’s increase in apnea alarms during the night. This is the new “puzzle” we need to figure out. Mitchell has central apnea. This means that Mitchell’s brain is “forgetting” to tell him to breathe. This is something that Mitchell should have outgrown by now. We are currently talking about getting Mitchell in for a MRI to see if they can see what is causing the apnea. We have not set anything up yet.

That was our big day that the clinic! We are hoping that Mitchell has a good night as he was on his HME for a little over an hour today. So far he seems to be doing well.

Take care,
Paul, Katie and Mitchell

Monday, November 14, 2005 9:22 PM CST

Little behind on photos....here are some new ones. Everything is going well. We'll try to update tomorrow after Mitchell's doctor appointment. He is getting his 2nd flu shot.

Take care,
Paul, Katie and Mitchell

Monday, November 7, 2005 8:48 PM CST

Well, there really isn’t a whole lot to report. We have been very busy with teachers coming and family coming to visit. Nana and Papa Cragg came to visit along with Mitchell’s Great-Aunt LaVonne. Mitchell was sure to show off his newest tricks. This weekend Auntie KT and Jeff came to visit. Mitchell loved playing with both of them, and Paul and I loved the breakfasts they cooked for us!

Mitchell has been feeling a little “under the weather” lately. He has a little bit of a cold. His nose has been runny, he isn’t eating as much, he’s coughing and his secretions are VERY thick. I am happy to report that we haven’t had to give him extra oxygen though. His saturations are a little lower, but not by much. We did start antibiotics today as we are wondering if his staph is back in this trach. The culture will be back in a couple of days, but for some reason Mitchell is very sensitive to staph infection and gets it very easily.

This week we will try to get Mitchell nursed back to health because he starts having more appointments next week. He will be getting his 2nd dose of the flu shot and will have a quick check up with Dr. Welle. Mitchell will also be getting his new molds for his hearing aids…can you believe he has already outgrown the 1st ones?

Paul and I are doing well. Though it was disappointing to see the Spuds loose their game, it has been great having Paul home by 4 every night. The days really seem to go by quicker. We are still searching for a part-time nurse. We haven’t heard from the agency yet on potential nurses. I cross my fingers it’ll be soon.

We got a surprise phone call from our insurance company on Friday. They wanted to congratulate us on our win. Ha! If there is one thing I’ve learned about this whole process it’s NEVER talk to the insurance company. I cautiously told them thank you but I can’t talk right now. I have become very paranoid about the intentions of any calls from insurance.

Getting healthy,
Paul, Katie and Mitchell

Thursday, November 3, 2005 10:32 AM CST

It has been a pretty busy week. We are now coming down from our “winning high”. Now we are waiting to see who will answer the add for another nurse. I’m not excited to go through that process again…but hopefully this time we’ll be lucky enough to get a good match right away. It will be even more crucial since Mitchell is having more episodes.

We are still racking our brains about what is going on with Mitchell. He does great about 90f the time, but it is disturbing that he continues to have his breathing episodes. He had 2 more yesterday. Dr. Welle did say that he thought they would get worse as far as frequency before they get better. This is because as Mitchell gets older he is going to know more of what he wants and especially being nonverbal….this may get tricky. Like I said, he really does well…but on those “sensitive” days watch out. I think that we are getting a few more “sensitive” days due to a few teeth coming in.

Mitchell is now on the “living with trisomy 13” website. We have met so many wonderful people through this website and listserv. Check it out! www.livingwithtrisomy13.org

Take care,
Paul, Katie and Mitchell

Monday, October 31, 2005 9:41 PM CST

Happy Halloween! We’ve had a great Halloween. As you can see, Mitchell dressed up like Batman. We decided to take him around to see the neighbors. They enjoyed seeing him and we really enjoyed showing him off! It was a lot of fun.

We also got some wonderful news today. We finally received the decision back from our last appeal….WE WON! This was such great news; it left me with tears and the urge to call everyone I knew including Paul at school yelling, “we won, we won”! This was an external appeal, which means that an outside agency call Maximus (contracted with the Minn. Dept. of Commerce) reviewed our case to determine if skilled nursing care is necessary. It was clear in the letter sent by Maximus that there was no question Mitchell needs skilled nursing hours. They stated, “Maximus CHDR’s physician consultant indicated that it is not reasonable to expect the member’s parents to be able to provide the high level of skilled services he requires on a daily basis.” It was so nice for us to hear that they actually understand and recognize that Mitchell is a very complex child to take care of. This decision means that we will continue to get our nursing care but the insurance company will be paying for it instead of Mitchell’s medical assistance. Basically, this will save us money and we will no longer have the 8-hour a day rule for nursing. We can go back to setting up the hours that WE want and need.

Mitchell also had a great day today. He didn’t spit up as much today and didn’t have a breathing episode. He had a good time Trick-or-Treating and had a few visitors today. His buddy Max came over to see him. Max was dressed up as a chicken. It is fun to see that Mitchell is now starting to catch up to Max as far as size….watch out Max! We also had some other friends stop by to visit and Trick-or-Treat. It was a fun and busy day today!

Happy Halloween,
Paul, Katie and Mitchell

Monday, October 24, 2005 10:47 PM CDT

I think that for the first time in 10 months I heard a doctor describe Mitchell’s test results as “normal”. Normal! This is something we don’t often hear. We were very happy to hear that the EEG looked good. This test isn’t 100so it isn’t saying that he will never have seizures but they can say that for now it looks like he isn’t. This is great news, however it draws us to wonder once again what it going on when he has these episodes. Mitchell had another one last night. He was with his nurse (Amanda) and she did a great job getting him out of it. After a long discussion with Dr. Welle today, he believes that it is still behavioral. This basically means that Mitchell gets upset and then stops breathing. There were 3 different reasons why this could be happening. #1 He is simply holding his breath causing his heart-rate to go down and finally passing out and then coming to. #2 He gets upset and this causes his trachea to collapses making breathing very difficult if not impossible or #3 He gets upset and this causes bronchial spasms which may make it hard for him to breath. I’m not too sure what I think about this. I have thought about it a lot today and have come to the conclusion that it may be all of the above. I really don’t think we will ever know the true reason and I do not think that there is anything that will “fix” this problem. I believe that it is something that Mitchell will just outgrow. Meanwhile all we can do is stay calm when it happens and pray he continues to come out of them okay. Dr. Welle warned that they might get worse before they get better…depending on how Mitchell deals with the “terrible twos”.

We also talked about Mitchell’s NG tube. We took an hour off of his night feeding and so we are on our way to weaning him off of his NG tube. I believe we have been patient with all of Mitchell’s medical issues…this is one area that my patience is running thin. However, I trust Dr. Welle’s opinion and will wait for his “go ahead” before we stop the night tube feedings. He is a very wise man and I believe we work great together trying to figure out this little guy.

Other than all of the medical garb….we had a great weekend. It was MEA so Paul had Wednesday, Thursday and Friday off. Paul and I went to the Casino on Thursday for a little “date night”. This was the 1st time I have been out of town in a year! It was great to see outside of Fargo/Moorhead. The Casino is a quick 45-minute drive on interstate. Mitchell behaved well for Amanda while we were gone. My mom and dad came to visit on Friday. They had fun playing with Mitchell and Paul and I had a great time sleeping in!

Mitchell also had a 1st this weekend. He started to respond by “talking”. It was so fun and encouraging to see. I was holding him and making his “dolphin” sound to him and he would respond with his own “dolphin” sound. We did this back and forth for a long time. He started getting the sound out louder and longer each time. He has always been able to make sound here and there, but has never been able to mimic you. This was a lot of fun.

Have a nice week,
Paul, Katie and Mitchell

Tuesday, October 18, 2005 5:36 PM CDT

I turned 10 months old on Sunday! Can you believe it? My friends Chris and Lisa and cousins Jake and Tracy came over and we celebrated by eating chili and watching the Vikings. I ended up sleeping through a lot of the game…if you watched it you probably did the same!

I’ve been working so hard since I came home from the hospital. I am working at getting use to my new mouth. I can even suck on a bottle now and Mom and Dad have to really watch or I’ll drink it within 5 minutes! (Then I’ll get sick) I also started eating real food. I’ve been getting some orange stuff mom calls carrots, green stuff “beans”, and my new one for today “sweet potatoes”. Mmmmm, I’ve liked all of them but am partial to the orange colored food. They are also giving me this hard cracker to chew on. It’s okay but I don’t like when it gets really soggy. If that happens, little pieces break off and that makes me gag. I’m working towards getting this tube out of my nose. My doctor said it should be very soon.

I have teachers visiting me almost everyday. Mom and Dad tell me that soon I’ll have company everyday! I sure like when people come over. I like playing with Mom, but she gets boring sometimes. It’s nice to see different faces. A guy comes out to play with me now. We work on sitting up, stretching, rolling and crawling. I think he’s pretty nice but he really makes me work hard. My teacher Jennifer still comes out 2 times a week. We play and I always try to impress her with my new tricks. I have a hearing teacher now and Mom says that she’ll start coming out 2 times a week as well. She is going to help me with my signing. I keep busy, but Mom and Dad make sure that I’m not overdoing it.

Dad and Mom haven’t talked to Dr. Welle about my test that I had. They say that we should know this week sometime. But, I’ve been good and haven’t had any bad spells. Mom says she’ll write when we hear.

Gotta go eat,
Mitchell, Mom and Dad

Friday, October 14, 2005 8:44 AM CDT

Mitchell had his EEG yesterday and did well. Dr. Welle decided to use a light sedation…he didn’t trust him enough to do it without. We won’t have the results for a couple of days. The pediatric neurologist has to look at it and then Dr. Welle will call.
If they find anything we will meet with the neurologist and discuss what we can do.
Dr. Welle is expecting to find nothing; I hope he’s right.

Mitchell hasn’t had an episode since Saturday. Dr. Welle made Mitchell pretty mad yesterday by poking his mouth and Mitchell tolerated it very well.

Mitchell weighs 19 pounds now. We will be working towards getting him off of the tube feedings. We will start giving Mitchell baby food and trying to push him to take more from the bottle. We will start to drop his night feedings and then hopefully he will totally be off of them.

Starting Veggies,
Paul, Katie and Mitchell

Tuesday, October 11, 2005 3:33 PM CDT

Mitchell has been throwing us for another little loop. Sometimes it seems like just when things look great…something happens. He has had 2 more breathing episodes since we had written last. He always seems to come out of them fine, but it definitely gets our hearts going.

I talked to Mitchell’s doctor yesterday about his episodes this week. He was very surprised to hear that Mitchell had 3 in one week. We were planning on bringing him in for a flu shot on Thursday but instead will be bringing him into the PICU for an EEG. I don’t believe Mitchell has ever had one done so I requested it hoping to rule out seizures. Dr. Welle agreed though he doesn’t think Mitchell’s episodes are seizures. He did say that Mitchell is a very high risk of having them. I have never thought they were seizures, but Saturday’s episode seemed to be a little different than the “typical” episode. The first thing I thought of when it was done was a seizure…so we’ll see.

We find it very puzzling that Mitchell went 3 months without an episode and then all of a sudden he has 3 in one week. But, I guess that’s Mitchell for ya.

Other than that he is doing well. He hasn’t had an episode since Saturday and we are hoping to keep it that way. Mitchell is working hard to sit by himself…he almost has it. We will let you know when we get the results from the EEG.

Oh, we still haven’t heard from our last appeal. Hopefully soon.

Take care,
Paul, Katie and Mitchell

Thursday, October 6, 2005 2:15 PM CDT

We have been busier than ever. We have been working hard at getting Mitchell onto his HME and off of his heater so he is more mobile. We tested him last weekend by bringing him to his first social event. Mitchell was off of his heater for about 1 ½ hours. We had nursing that night, so we knew he’d be watched closely. He did well, but was pretty dry the next day and didn’t get any HME time. Amanda made sure she suctioned him a little extra that night and used a little more saline than normal. Overall he did well. It was so nice to get out during the day…and as a family. It was a good test for all of us.

We did get a little disappointed this week as Mitchell had his first breathing episode since June. I am still unsure of the reason. It was the day after he was on his HME for the hour and a half. I’m not convinced that the dryness caused it though. We haven’t been taking the air out of his tummy by the NG tube and I’m guessing this was the cause. This was very disappointing for us. We really were hoping to be able to get rid of the NG tube after his palate repair. We will be seeing Dr. Welle next week and we’ll talk about what we need to do. The episode wasn’t a real bad one, but was enough for me to give him a little oxygen. He perked right up and was ready to play after a short nap.

Mitchell is still working hard at sitting up. His physical therapist says that with how well he does on his tummy and rolling, he has no doubt that he’ll master sitting up. We just need a little more practice. Mitchell prefers standing or being on his tummy. He likes to have both hands free to play and so he gets “too busy” to sit up. We are working on teaching him to support himself.

We saw the plastic surgeon yesterday. He said that he was very pleased with Mitchell’s recovery. All of his stitches have dissolved except for 1 little stitch under his lip. We are guessing that he will have to have a revision done in a few years being his nostril didn’t “pop” up as much as we thought it would. But, only time will tell and he still has some healing and stretching to do.

Write more next week,
Paul, Katie and Mitchell

Thursday, September 29, 2005 7:12 PM CDT

We’ve been pretty busy this last week. It seems like all of a sudden our calendar is full again.

Mitchell had a big day today. Our 1st appointment was with the ENT (Ear, Nose and Throat Doctor). This was the doctor that put Mitchell’s trach and ear tubes in. He said that Mitchell’s ears look great, as does his trach site. We will have a re-check in 6 months unless we end up with questions about his tubes or trach earlier than that. Many people have been asking about how long Mitchell will have his trach in, or if he’ll get it out now that his cleft surgery is done. The reason for Mitchell’s trach is not related to his cleft lip and palate. However, we did talk to the ENT about a realistic timeframe for the trach. We really cannot say when or even if Mitchell will be able to get his trach out. But, it sounds like we will re-visit the topic in about a year. Mitchell has to grow and hopefully with that growth, his trachea will grow stronger and less floppy. Again, this may not happen if the cartilage is weak due to his syndrome. Only time will tell.

Mitchell also saw the audiologist today. He got his hearing aids! I was nervous for how Mitchell would react to them because he startles and cries if something is too loud. Brian put the hearing aids in and turned them on and said hi…Mitchell gave him the biggest smile that we’ve seen since his cleft surgery! We are amazed at how he adapted. Mitchell hasn’t even tried to touch them once. It is like he doesn’t even realize they are there.

Tonight Mitchell sat up for about 5 seconds on his own. Now, this doesn’t sound like a big deal, but for Mitchell it is a big accomplishment. A week ago Mitchell could hardly even sit for 1 second without falling over and he really wasn’t flexible enough to sit very well.

It was an exciting day for all of us. Here are some new pictures. His lip is pretty much healed and mouth isn’t far behind. Mitchell is still using a sippy cup to eat.

Hearing new things,
Paul, Katie and Mitchell

Thursday, September 22, 2005 9:19 PM CDT

Mitchell’s appointment went well today. Dr. Lamb got him in and out in about 10 minutes. I was very impressed; we had Mitchell home and back on his heater within 45 minutes. So far Mitchell is doing well, his secretions are a little thick but hopefully he’ll have a good night.

We will be starting physical therapy tomorrow on his hips. This week a therapist from early intervention will come out and next week a therapist from MeritCare will come out. Together, they will determine how many hours a week Mitchell will need. I’m guessing it’ll be maybe once or twice a week. Once again Mitchell’s date book is filling up fast. He is quite the social butterfly.

Mitchell keeps trying to smile, but can only get a smirk. We are anxiously waiting for that first “new” smile.

Hope to smile soon,
Paul, Katie and Mitchell

Wednesday, September 21, 2005 10:38 AM CDT

Mitchell came home last night and had a good 1st night home. Amanda was over last night to take care of him and watch him over night.

Overall we are pleased with how Mitchell has handled this. The nurses were surprised to see him go yesterday, they were expecting him to stay at least a week. I think we all are always so surprised at how he deals with surgery.

We have an appointment with the plastic surgeon tomorrow at his office. This will be interesting. We have never taken Mitchell anywhere other than the hospital. He will be off of his heated air for a while, but they are hoping to get him in and out. (If not, we’ll just have to leave and re-schedule) This is a big test for Mitchell and I’m not so sure it is a smart thing to do so close to surgery. But, we’ll see how he is doing tomorrow and if he isn’t doing great respiratory wise, we’ll have to cancel…the last thing I want is for him to be back in the hospital. Mitchell is still having a lot of drainage from his nose and we do have to get this checked out.

We haven’t heard from the state yet on our last appeal for nursing care. They have up to 40 days but I sure hope we hear sooner than that. We do have it covered by the medical assistance that Mitchell has, but they are starting to be very picky about when we use our hours. This makes absolutely no sense to me being they are paying for 60 hours regardless of when we use it. I’m sure it was a decision made by someone behind a desk that has no idea what it is like to have a child with disabilities. Even though I’ve had the education for special education, I have a whole new outlook on society and what is done and not done for these children and families. It is ridiculous.

Here is another picture of Mitchell post-op. The nurses got him cleaned up (briefly), so he looks pretty good. It’s nice to have him home and now we are hoping for a smooth couple weeks of recovery. We’ll let you know how the appointment goes tomorrow.

Thanks for the prayers,
Paul, Katie and Mitchell

Sunday, September 18, 2005 10:18 PM CDT

Mitchell had another great day today. Dr. Welle says he can go home either tomorrow night or Tuesday. I’m still thinking Tuesday, but I really think that they want to send him tomorrow. Today we tried feeding Mitchell from a special bottle that trickles milk into his mouth. He was only able to take 4 ml before crying and dropping his oxygen sats. Tonight we decided to use his haberman bottle and just “shoot” it in like a squirt gun. This really worked well for him. He recognized the nipple and was excited to eat. He was able to help me squeeze, which he liked to do and was able to take 20 ml. (almost an ounce) He usually takes 90-140ml at a time, so he still has a ways to go, but at least he’s taking some. Mitchell is getting the rest of his feedings by his NG tube. (tube in his nose)

Mitchell’s spirits were up today as well. He has been trying to smile and laugh, but just can’t yet. Once in awhile we’ll try to crack him, but I’m sure it hurts, so I understand if he isn’t smiling like he use to. I bet he’ll be smiling by the weekend though.

Here is a picture of Mitchell 48 hours after surgery. He finally let the nurses clean him up this morning. I think he looks pretty good. A lot of the swelling has gone down and he isn’t really bleeding much at all. You can also see his arms are in little armbands so he can’t touch his face. I have to say, I am so surprised at how he is handling this. Mitchell doesn’t seem to mind having his arms not bend…he just seems to adapt. He now plays with smaller toys and brings them up above his head so he can see them. He is such a little trooper, we are very proud of him and how strong he is!

Home soon,
Paul, Katie and Mitchell

Saturday, September 17, 2005 7:25 PM CDT

Mitchell had a good day today. He has started to play more and is able to stay awake a little longer. The nurses are trying to keep him on Tylenol and only give him the morphine if he absolutely needs it. Usually I’m pretty adamant about only giving him Tylenol, but in this case I told them I’d prefer the morphine for another day. I can only imagine how much his mouth hurts. I can only compare it to getting my wisdom teeth pulled…how bad my jaw hurt from keeping it open and then the pain that goes along with the incisions….well, I see this as 10 times worse than getting wisdom teeth pulled. Thank God he won’t remember it. Though I have to say, he sure is a trooper. It is amazing that only 24 hours after major surgery, he is playing and attentive. When he was in with the flu, he acted MUCH more sick than he does now. This just blows my mind.

Mitchell is a little sensitive and he has every right to be. We can clean him up a little bit, but he refuses to let anyone touch his nose or under it. So, he still looks a little messy. I was going to “sneak a wipe” today with a gauze pad but the minute Mitchell saw the gauze he started to cry and drop his oxygen sats. Needless to say I didn’t “sneak a wipe.”
So, he’ll just have to be a little dirty for a while. We are so excited for you to see him and will post a picture as soon as we can get a less graphic one.

Overall he is doing very well. We were thinking that he would need a blood transfusion last night or this morning because he was loosing a little more blood than he should have. But, looks like the bleeding has stopped so hopefully he won’t have to have one. Mitchell started getting formula through his NG tube today. They are starting him very slowly because we don’t want him to spit up. So far he has tolerated 1 ounce every 3 hours and will be moved up to 2 ounces every 3 hours tonight. Plans for discharge are still unknown. He has to be up to full feeds. I personally would like him to be able to take some food by mouth before he comes home. This would be done by a special bottle because he cannot suck for a week or so. I do not want to have to rely on the NG tube because if that comes out we are not putting it back in at home. With his “new palate”, I just think it is too risky to try and place the tube at home. I don’t want to chance taking out any stitches. I’m guessing Tuesday for a discharge day, but that is just my opinion.

Thanks for the prayers,
Paul, Katie and Mitchell

Friday, September 16, 2005 7:20 PM CDT

It’s done…finally!

Mitchell went into surgery this morning at about 7:30. They started the procedure at 8:00 and were finished at about 10:30. It went well. The plastic surgeon was very pleased with how his palate closed and happy with the lip and nose repair. So far it looks like Mitchell’s palate is fully closed, but there is a possibility that it could open up a little bit. We are praying that it stays as is.

It has been a long day, but Mitchell is doing well. He does have some oxygen de-saturation when he gets mad, but is recovering quickly from it with a little help. They are keeping him comfortable with pain meds, but being very careful as they do cause apnea at times. I was planning on putting a picture on and could’ve if I had taken one immediately after the surgery…but we were too busy oogling over him and at this time he is having a little drainage that I don’t think would be the greatest to show. But, let me know if you want to see it. I’m actually hoping that by the end of tomorrow we’ll be able to get a better picture for you to see. But, for now I’ll try to describe him…he is pretty puffy right now which will only get worse for a couple days, but after the weekend it should start to go down. He has a little button nose-his “cleft nostril” is caved in, but I guess that “pops” up after awhile. His mouth is just the littlest little thing….it puckers right now, but again in time the muscle will relax a bit. All I can say is he looks pretty different.

Mitchell has been sleeping a lot and they are trying to keep him like that. He did wake up for me a little bit this afternoon. It was fun to see his eyes open and he would just crack his mouth open a bit. I can’t imagine how different this feels for him. But, he will soon learn that life is going to be much easier.

Pray for a quick recovery,
Paul, Katie and Mitchell

Thursday, September 15, 2005 9:14 PM CDT

We are all crossing our fingers that this time is for real.

Mitchell went in this morning at 11:30 and got the “go ahead” from Dr. Welle. His IV procedure was at 2:00 and he came out of that like a champ. (A little mad though) The radiologist got an IV in his neck on the first try. Mitchell seems to be on his way to surgery?! I don’t think that anyone will believe it until he is out of the OR.

Surgery will be at 7:15 tomorrow morning. We are hoping to have him out by 11:00 or earlier. We are all pretty excited about getting this done…finally! As of now Mitchell is the only one in the PICU so he is getting a lot of attention. (He LOVES it!)

We did have an x-ray done on his hips today because they seemed a little tight and we just wanted to make sure that the hip was okay. The x-ray came back perfect, so it is just that his muscles are tight. We will work on this by doing exercises.

Pray for a successful surgery,
Paul, Katie and Mitchell

Wednesday, September 14, 2005 5:46 PM CDT

Well here we go again. As Thursday and Friday get closer, there are many different emotions in our household. However, I have to say…we are more than ready to get this surgery done. I’m not so sad anymore…now I’m more excited. I am really going to miss his smile, but I know that life is going to be so much easier with his new one. I’m getting excited about his journey on to bigger and better food. BUT, most of all, hoping that we can get rid of that darn haberman bottle! Mitchell loves it and does such a nice job with it…but it is a pain. (My luck he’ll refuse to take another kind)

Mitchell will spend the night with his nurse (Amanda) in hopes that if anything does come up, she will catch it. But, we are hoping and praying that there are no surprises. Mitchell’s procedure is scheduled for 2pm tomorrow. Again, this is to get a good IV in before surgery. We do not have a time for surgery, but I’m guessing he’ll be 1st or 2nd case…which means early. I’m hoping to get time to update the site both on Thursday and Friday so you know how both procedures go.

Once again we ask for your prayers. They have gotten our family so far in the last 9 months. We will be praying for a successful surgery and recovery.

Hope to bring good news tomorrow,
Paul, Katie and Mitchell

Friday, September 9, 2005 9:25 AM CDT

We’ve been meaning to update the page but just haven’t gotten to it. Mitchell is doing well. I think he is working on his other bottom tooth. He is still doing well with the cereal and doesn’t seem to mind it.

Mitchell’s teachers have been coming out again. They are pleased with his progress.

Mitchell’s surgery has been re-scheduled for a week from today, Friday the 16th. Again, we will go in the afternoon before for the IV placement. We pray that this is our last time we have to do this. (I’m sure the Plastic Surgeon is as well!) Mitchell seems to have recovered well from the flu. As Friday gets closer, I’m get more and more nervous…We have waited so long for this surgery and it will make eating cereal so much easier. But, if there is 1 thing I’ve learned from this experience it is that everything happens for a reason. Mitchell will get the surgery done when it is best for him. All we can do is keep re-scheduling and praying that this is the time for him.

Pray for Health,
Paul, Katie and Mitchell

Monday, September 5, 2005 2:27 PM CDT

Mitchell finally feels 100%. He started smiling more, rolling over and really playing on Saturday. It is nice to have our little Mitchell back to normal. He got to play with Grandma Deb and Grandpa Dave this weekend. (And managed to give Grandma the nasty flu bug) It was the type of flu that hit hard and fast...but luckily it only seems to last 24 hours in adults. I have still been lucky enough not to get it!

We started rice cereal today. Mitchell’s doctor and I decided that we couldn’t wait any longer to start solids. Our plans were to wait until his palate was repaired…but I think after this last attempt, we both decided to move on with or without the palate repair.
Mitchell really did well with the cereal. Of course he had it all over his face, just like any baby’s 1st attempt at cereal. But, I have to say he did an excellent job getting the cereal in the right places so he could swallow it, even with his open palate. The best thing was, he somehow managed to avoid getting cereal up the open part of his palate. Of course Mitchell thought that he should feed himself.

I will call the plastic surgeon tomorrow to see when we can attempt surgery again. I’m hoping we can get him in again by the end of the month. I really want this done before the flu and cold season really hits because the hospital is the last place we want to be when that season comes.

We will be meeting a nurse tonight to see if we think she will be a good fit for Mitchell. We are looking for someone to fill the last 20 hours of nursing care for Mitchell. It will be nice to get all of the nursing care filled and a schedule figured out.

Feeling good,
Paul, Katie and Mitchell

Thursday, September 1, 2005 9:42 AM CDT

Mitchell is home! We brought him home Tuesday night at about 9:00. Sorry it took so long to post, but it seems like every time I set him down, he throws up. Mitchell still isn’t 100but he is smiling again. He has lost a lot of weight and if he doesn’t stop vomiting, I see him loosing more. This is hard to see as we work so hard to get every ounce he gains. I’m not really sure why Mitchell is still throwing up. We continue to monitor him closely for dehydration. His nurse is coming out nightly this weekend. This is such a big help, as she knows more of what to look for. I sure hope he gets back to normal soon.

Mitchell’s teacher will start to come out again next week. I was so excited for them to see Mitchell and see how strong he has gotten, but with this recent illness he has gotten pretty weak. I’m sure he’ll hope right back to where he was, but it may take a week or so.

We are waiting until Mitchell feels better before we re-schedule his surgery. Dr. Welle said wait until he is 100nd then schedule at least 2 weeks out. So, it will be about a month before our next attempt. Hopefully this will be our final attempt!

Good to be home,
Paul, Katie and Mitchell

Monday, August 29, 2005 10:02 PM CDT

Mitchell is still not home yet. We were all packed up today and then we weighed him and he has lost a little over a pound. They will be watching his input and output a little more closely and are checking his electrolytes. I’m not really sure of the plan for discharge yet. He is feeling a little better but not 100% yet…I’d say maybe 60%. He will smile once in awhile but it still takes a lot of energy.

I have been the lucky one who hasn’t been sick yet. Paul ended up with the 24 hour flu bug yesterday. I’m taking my vitamins and trying to get my rest, and praying that I don’t get this. I feel that if I dodge it, I will be very lucky and the chances of that are slim…but I can always hope. So I’m washing my hands constantly and using up all of the foam sanitizer at the hospital.

Paul starts school tomorrow. This will be the start of a very busy fall. We are happy that we have been accepted to get 60 hours of nursing care. (Insurance still refuses to pay) We’ll have almost every night covered which will be great. I am also hoping to get to some football games.

Things are going pretty well though. I’ll try to get new pictures on tomorrow. It’ll be nice to get Mitchell home and back to his normal self. We miss the smiley little guy. Dr. Welle even had a tough time getting a smile out of him this evening. (I think he misses his smiley face too)

Home soon,
Paul, Katie and Mitchell

Saturday, August 27, 2005 9:55 PM CDT

They discharged Mitchell on Friday afternoon. We were back home with him by 2:00, and though he looked a little uncomfortable, he didn’t look too bad. Well, shortly after getting home, Mitchell started to vomit. We were concerned about this especially being it was a Friday and knowing that if we didn’t get a hold of Dr.Welle, we’d probably end up in the emergency room. Our biggest concern is that Mitchell would become dehydrated and like Dr. Welle said, “He is the last kid that we want dehydrated given his IV problems”. We talked to Dr. Welle at 4:30; Mitchell was back in the hospital by 7:00.
He had a rough night last night. He didn’t sleep well and just felt crummy. We go by the “smile meter”….he hasn’t smiled since we brought him in yesterday. Poor guy, he always smiles, even coming out of surgery so we know he really doesn’t feel well. We know for sure that it is just a flu bug that he has gotten, his lungs look good. They are feeding him clear fluids with his NG tube and is keeping it down. He seems to have a little more attitude today, but still pretty down. I’m not sure when they will discharge him again. They are being overly cautious because they HATE discharging and then re-admitting. He may come home tomorrow, but I guess I wouldn’t be surprised if he stayed until Monday.

Hope to feel better,
Paul, Katie and Mitchell

Thursday, August 25, 2005 9:34 PM CDT

I guess 3rd time isn’t a charm…maybe the 4th. Yep, you guessed it, cancelled.

Amanda (Mitchell’s nurse) woke us up this morning at 6 because Mitchell was running a fever (100.2) and was very congested and we needed to decide what to do with him. (Bring him to the ER or wait for his appointment.) Looking at Mitchell, we decided to call the PICU and see what they had to say…we ended up bringing him in about an hour earlier.

You guessed it, by the time we got to the PICU, Mitchell was smiling and making all of the nurses smile. Even though he was smiling, he just wasn’t as active as usual. The decision to cancel surgery was a very difficult one…one that Paul and I gave to his pediatrician…who in turn gave it to the plastic surgeon. We ran all the routine tests; X-ray, blood gasses, blood count, sputum culture; Mitchell came out pretty much on the fence. To make the decision harder, his temperature had dropped as well. (Which is great, but not helpful in this case) We could go either way with the surgery. Mitchell definitely wasn’t 100but looked like he could be 90Dr. Welle called Dr. Lamb (the plastic surgeon); he really didn’t get much out. He just said that Mitchell didn’t seem to be feeling 100Before Dr. Welle could even share the test results with Dr. Lamb, it was canceled. He said that Mitchell has to be feeling 100He has waited this long and he can and should wait until he is healthy. That was that.

Turns out it was a very good decision. We kept Mitchell in the PICU today for observation. When Dr. Welle came to look at him tonight he still looked okay, but Paul and I thought he looked worse than earlier. I think he really is just getting a cold. (congested, watery eyes, coughing, and sneezing). The first reaction was to send Mitchell home for the night. But, after talking it though with Dr. Welle, we all decided that a night in the PICU wouldn’t hurt. We wouldn’t have nursing care tonight and Mitchell has never been sick before so we don’t know how he is going to react to having a cold. The combo of the two just made me a little uneasy bringing him home. We are hoping to get to the hospital tomorrow, hear that he had a good night and go home. We will have nursing care Friday, Saturday and Sunday night. It will be comforting knowing that someone will be up with Mitchell all night.

I will be waiting until early to mid next week to call and reschedule the surgery. We have to wait and see what we are dealing with here as far as how ill he is going to get. Like I said, he seems to be doing fine, but this is Mitchell and being his major issues are with his respiratory system, I just feel we need to be cautious as this is our 1st respiratory illness.

Pray for health,
Paul, Katie and Mitchell

Wednesday, August 24, 2005 7:43 PM CDT

Well, here we go again. We will bring Mitchell in tomorrow at about 11:30. He will have his IV put in under ultra-sound at about 1:00. I’m not to thrilled about this being he is going to be put under again and cannot eat after 2AM. I wish they could figure out another way to do this, or at least have the procedure a little earlier in the day. Oh, well.

Mitchell is doing well. We are all getting geared up for the next attempt at surgery. I know that it will get done when the time is right, so I guess we’ll see if Friday is the day.
I myself am more prepared than ever for the surgery. I am getting more excited than I was last week. We are unsure of what time surgery will be, but I’m sure he’ll be 1st or 2nd.
I’m guessing anywhere from 9-11:00 Friday morning.

I have been working on the next appeal for the insurance company. This is the last opportunity we have. I have been talking to a lot of different parents who have been in this position as well as children with disabilities advocacy organizations. Everyone I’ve talked to cannot believe that insurance doesn’t see Mitchell’s cares as “skilled” cares. We’ll see what the external review board thinks. The good thing is that if they decide that insurance should cover it, the insurance company HAS to and cannot appeal the decision.

I talked to the mother that made the “Living with Trisomy 13” website yesterday. It was so nice to talk to her. She gave a lot of good advise about the appeal and was just a very positive person to talk to. Her daughter is 5 and has full trisomy 13 and doing well. It’s always nice to be in contact with people who are “living with trisomy”.

Please keep Mitchell in your prayers,
Paul, Katie and Mitchell

Sunday, August 21, 2005 9:22 PM CDT

It sounds like we are still on for Friday, for now. I had a little scare this weekend, as I felt a nasty cold coming on…I loaded up on vitamins and I think that I drove it away before it got here. (I hope) A cold is the last thing I need…and the VERY last thing Mitchell needs right now. But, that would be our luck.

Mitchell popped his 1st tooth this weekend. It isn’t all the way through, but you can actually see and feel it. He hasn’t been crabby at all, so I was surprised to see it.

We are anxious for the end of the week. I have to say, I am much more prepared for this surgery than last weeks. I was getting pretty down about Mitchell getting his lip repaired but I think the “practice run” on Monday helped a lot. I’m still going to miss that happy wide smile, but now am starting to get excited to see what our little guy is going to look like.

Not long now,
Paul, Katie and Mitchell

Wednesday, August 17, 2005 3:34 PM CDT

Mitchell acts as though Monday never happened. He truly is an amazing little boy. I started counting his poke and stopped when I got to 40 and just couldn’t count anymore…poor little guy. He has little bruises and poke marks everywhere, but even when we pick him up and touch the poke marks, he doesn’t even seem to act like they are there.

I have been in contact with both the plastic surgeon and pediatrician. It looks like we are going to try for Friday the 26th! It’s nice to know that they could get us in that soon. I think the plan is to bring Mitchell in the night before and have the IV placed then. This will probably be done in the radiation procedure room so they can use ultra-sound. We will have to go in for a pre-op appointment at the beginning of the week.

3rd time’s a charm? We’ll see…
Paul, Katie and Mitchell

Monday, August 15, 2005 9:57 PM CDT

I should have known that Mitchell would challenge the phrase, “I personally will not believe it until I see them wheel him in.” After all, this is what Mitchell does best. Mitchell went into “surgery” at 11:00 this morning. The wait seemed a little different, as we hadn’t gotten a call in the waiting room to say that the procedure had started or that they were stitching him up. I will tell you now so we don’t have anyone panic; Mitchell is doing great. Anyway, Paul and I anxiously waited for 2 hours before hearing anything. This made me wonder what was going on, but not yet worried…until I saw the anesthesiologist come out with a very serious look on her face while asking if she could talk to us. Let me tell you, my heart sank. She told us that the surgery had been cancelled because they could not get an IV into Mitchell. The Intensivist and Plastic Surgeon also came out to explain what had happened. Usually they put Mitchell under and then they start an IV. Many of them tried (for 1 ½ hours) but just couldn’t get it. Although we were very disappointed, we were so relieved that this was the reason for the serious look rather than it be something wrong with Mitchell.

Mitchell came out of anesthesia fine and we brought him home at about 7:30 tonight. (With his same beautiful wide smile!) We are unsure of when the next (3rd) attempt will be. We talked with the plastic surgeon about moving his schedule around so that it can be sooner rather than later. He usually books out 2-4 months in advance and we feel that Mitchell just shouldn’t have to wait this long.

On the up side…there was a baby that had his cleft surgery before Mitchell and we met his parents. They invited me into see their son so I could see how the repair looked. It looked great! I’ve been in touch with many cleft parents, but never in person. It was so nice to chat about the same feelings of sadness as the cleft is repaired. I also think it was helpful to actually see what Dr. Lambs work looks like coming out of the OR.

We hope to have more answers within the next couple of days. We will be planning the next attempt with the plastic surgeon and Mitchell’s doctor. My goal is to have a plan by Wednesday.

We’ll try it another day,
Paul, Katie and Mitchell

Sunday, August 14, 2005 10:34 AM CDT

Tomorrow is Mitchell’s big day! I personally will not believe it until I see them wheel him in. Mitchell has had a great couple of weeks and we hope that this brings recovery a little easier for Mitchell.

His surgery is set for 10:45. Dr. Lamb said that he really has no idea how long the surgery will be, but hopefully 2-4 hours. He will get pain medicine through IV tomorrow and possibly Tuesday depending on how he is feeling. We are unsure of how long he will be in the hospital…with Mitchell it is never a question we can even guess the answer to. We are hoping that he is in no longer than Friday.

We will try and update the website tomorrow night (probably late). And will get pictures on as soon as we have time. Please keep Mitchell, his surgical team, PICU doctors and nurses, and Paul and I in your prayers the next couple of days. We pray for a quick surgery with a quick recovery.

Keep Mitchell in your prayers,
Paul, Katie and Mitchell

Sunday, August 7, 2005 4:12 PM CDT

Mitchell seems to still be on the road to surgery a week from tomorrow. I talked to his doctor and he said that he will use the physical Mitchell had a week ago for his pre-op. We are to watch him closely to see if there are any changes…if so, he will take a look at him this week. We will have the ICU doctor look at him right before surgery to make sure his lungs sound good.

We have had a few very nice days and so we have been able to get out for a walk almost daily. This is so refreshing for all 3 of us! Mitchell loves being outside and loves getting the attention from the neighbors. Mitchell is doing well off of his humidified air. We have noticed that the days we put him on his HME the 3 times (30/45min each time), he needs to be suctioned more during the night and his secretions are very thick. We’ll have to watch this closely so he doesn’t get a “plug” and hopefully with time this will get better.

The nursing care is working out great. Paul and I went on a date on Thursday night…it has been a long time since we have been able to do this. We had a nice dinner and then shot a little pool. It was a lot of fun. Mitchell seems to do well with Amanda and she does a nice job with him as well. We are still working on the insurance, but we should have an answer to our last appeal by the end of the week. If this gets denied again, we will have one last appeal process.

Getting closer to surgery,
Paul, Katie and Mitchell

Sunday, July 31, 2005 10:44 PM CDT

Once again we are happy to report that Mitchell is still doing well. Though it gets harder to write these updates when there is nothing exciting to report…we welcome the “boring life”. We have had enough excitement in the last 7 months to last us awhile.

Nursing care seems to be up and running. Friday was our first 12 hour shift (6PM-6AM), and though Paul had baseball, I found plenty to do. My friend Sally was up for the weekend and we went for a nice long walk. It was so refreshing to get out of the house. I then got to venture to Target. It was a great Friday night. I tried not to worry about Mitchell and tried to peek in as little as possible. Right now we have the nurse almost every other night. We have been getting an eight hour shift, ten hour and then one twelve hour. Amanda is very flexible, as are we and it seems to work out great. I guess at this point I could care less when she comes, as long as she comes sometime. The hope is to get a few more hours so that we can maybe have one more night covered and also a short day shift (4 or 6 hours) This way I can actually get out during the day.

I recently got in touch with a family that has a little boy with T13 Mosaic. There little boy Stephen is on the living with tiresome 13 website. After seeing his picture and reading his story I had to contact them. They look very similar and believe it or not have the same “crying breathing episodes”. His dad says that they haven’t met anyone else with the same problem and was glad that we shared it with them. It was nice to hear that we aren’t the only crazy parents that have to be at our son’s beck and call so he doesn’t cry. Though I have to say…they have a bit of help with 7 other children! It is always nice to talk/write to other parents in similar situations.

Oh, I almost forgot. Paul, Mitchell and I went on our first walk since the trach. All three of us enjoyed it.

Doing well,
Paul, Katie and Mitchell

Wednesday, July 27, 2005 9:09 PM CDT

Back connected with the outside world! Let me tell you, for those without a wireless connection to the internet…I highly recommend it. (Until it breaks down)

The nursing went well last night. I think that Amanda does a very nice job with Mitchell. It is so comforting to see her calm and quiet demeanor and yet she seems confident in her nursing skills. (As do we) She fits into our little family nicely. She has a 1 year old, so she is on top of the baby game. They will come again tonight from 11pm-7am. It is so nice to sleep in our room again…and boy did I sleep. I didn’t even hear Paul’s alarm go off. (And I’m usually a very light sleeper)

Mitchell’s teacher comes tomorrow as well as the hearing teacher. We will be able to ask her some questions. It’ll be nice to get some more information on how the hearing aids work in babies. I know many of you have the same questions.

Nana and Papa Cragg came up for a couple of hours today. Mitchell was his usual self...happy and smiling.

He is starting to make sounds. This is fun and kind of scary at the same time. I guess we just are use to him being so quiet, so when something comes out it surprises us. He is kind of making dolphin noises right now. It is so nice to hear this, especially since they didn’t think he would be making much sound because he has such a big trach in.

Well, here are finally some new pictures.

Enjoy,
Paul, Katie and Mitchell

Tuesday, July 26, 2005 1:07 PM CDT

Well, Mitchell had a great day at the hospital yesterday. (we haven't been able to say that too many times!)

Mitchell's hearing test still came back with hearing loss. But we are thrilled to know that it can be corrected with hearing aids. We will be working with the audiologist and the hearing teacher will come out on Thursday to answer any questions. Of course we'll have many!

Mitchell's doctor was very impressed with how Mitchell is doing. All tests came back excellent. Head ultrasound showed no change so we will not have to do anything about that. Lung x-ray looked great. Culture of trach-no staph. Blood gasses, perfect and weight 15.1 pounds!

We will still be using the tube for night feeding, we would still like to pack on a few more pounds before surgery. His doctor would also like to increase the amount of time Mitchell is on his HME (off of the CPAP)...this will lead to freedom for Mitchell! We can now take him off of it 3 times a day for 30-45 minutes as tollerated. Walks outside are also okayed!

It looks like the 15th of August is still on for Mitchell's cleft surgery. We are praying that nothing changes in the next couple weeks!

The nurse starts tonight. We'll have an eight hour shift tonight, ten tomorrow and twelve on Friday. Yah! The appeal will go in today to the insurance company...we'll see what they have to say hopefully by the end of the week!

Lookin' good,
Paul, Katie and Mitchell

Saturday, July 23, 2005 4:49 PM CDT

Mitchell has had a really good week at home. He has had so many visitors lately and he loved playing with all of them.

Nana Trudy and Auntie KT came last Saturday to visit for the day. Mitchell loved smiling and playing all day long!

On Monday, Grandma Deb and Uncle Beckett came over to play with Mitchell. Mitchell wasn't too sure about Uncle Beckett's hair on his face...but thought it was fun to touch! Beckett and I escaped from the house for a bit to play mini-golf and go out for lunch. Though I've been on "house arrest" for a month, I still mustered up enough energy to beat my big brother in mini-golf! It was nice to get out of the house for awhile.

Amanda, the nurse that will be taking care of Mitchell started getting trained in this week. No, we haven't "won" over the insurance company yet. But Mitchell gets medical assistance for his disability and they have agreed to cover it. We are working on our 3rd appeal with our insurance company. This has been a big stress, and yet even though MA will cover the nursing care; we are now appealing because it is the right thing to do. (And I can't let them win!)

Everything else is going well. Mitchell will go in for his 2nd hearing test on Monday. If we get the same results, he will be fitted for hearing aids at that time. We are still hoping that he will pass, but are pretty sure that the results will come back the same. Looking at the big picture...hearing aids seem pretty minor to us. We will try to post Monday night to let you know how it goes.

Sorry, no pictures. Our laptop has all of our pictures on it and we are having trouble with the wireless internet, so we cannot put new pictures on. Hopefully someone will fix it on Tuesday. We have some good pictures of Auntie KT and Uncle Beckett that we'd love to share!

Have a nice weekend,
Paul, Katie and Mitchell

Sunday, July 17, 2005 8:51 AM CDT

7 months old! Mom told me that we were too busy to write yesterday, but that I could write today! My Auntie KT came to visit me yesterday along with Nana Trudy. I had so much fun showing Auntie all of my new tricks! She thought I was great!

Let me see…the last time Mom and Dad let me write, I was 5 months old. A lot sure has changed since then. My Mom has a hard time keeping clothes that fit me! I’m not a chunky guy (okay, maybe my cheeks are a little pudgy) but I am tall! She also has to be extra careful with how the top buttons with my trach. When I came home from the hospital, she even sent my Dad out shopping for clothes. He got me a bunch of real cool Twins outfits! Dad says he doesn’t play dress-up, but I think he really liked shopping for me!

Besides growing longer and gaining weight, there are so many other things I’ve been working on as well. I can roll like a mad man now! I’m getting good at getting from my back to my stomach. Mom gets a little jumpy, she said that I have to be careful not to bump of plug my trach. (Moms worry too much!) I am getting better at sitting in my Bumbo chair and am pretty good at holding my head up. I can also skootch on my back to get a toy if I need to. I like to reach with both of my hands and at the same time! My Mom and Dad are working on some hand signs…I’m not really getting the hang of them yet, but my teachers say it’ll take time. I recognize my bottle now and actually I even get excited when I see mom making it at the sink! I almost can hold the bottle on my own and Mom says I’d probably be able to if I didn’t have to use the special bottle. I’ve also learned to look on the brighter side of life…because of this I am happy all of the time. I love smiling at anyone that will smile at me. But, don’t bring a camera because I still don’t like smiling for cameras.

The best thing is that I can breathe so much better and I am not having the problems that I use to have. Oh, and everybody oogles over me! I love all of the attention! Mom says that in a week I’m going to visit my friends at the hospital to get my hearing tested. They really oogle over me…I can’t wait! But, I hope it is just a short visit.

7 months already,
Mitchell, Mom and Dad

Friday, July 15, 2005 7:39 AM CDT

Yesterday proved to be a very trying day for Paul and I. We were denied once again for nursing care for Mitchell. The insurance company said that they thought we just needed respite and not skilled nursing care. They also said that it is obvious that we can take care of his medical needs ourselves. I sure would like them to try and come over and give us some “respite” and see if they decide that a nurse is needed. It is so frustrating that because we are competent parents and because we have taken the time to learn Mitchell’s medical needs, we will not receive help. We have not given up. We will be talking to school personnel today because the school employees were told that this insurance was the same if not better than what we had before. It obviously isn’t, because in June we had no problems getting the old insurance to cover nursing care.

We had a great week. Lora and Madison, Paul’s cousin and 2nd cousin/Goddaughter (our flower girl) came over for a day to visit. It was so nice to see them…I think I talked Lora’s ear off. It is always so nice to have company! It was so fun to see how Mitchell reacted to Madison. She is going into 2nd grade and is the oldest child Mitchell has been around. He watched her like a hawk! Madison was interested in Mitchell’s different medical issues. It was nice to see that she was just curious and not scared of him. She treated him like any other baby and that was very comforting for Paul and I. I really enjoyed talking to Lora…. it’s always nice to talk to someone from the “outside world” in person instead of just e-mail or phone.

Auntie KT will come to visit for a day this weekend. Mitchell will also have his Uncle Beckett visiting early next week. Busy, busy! But, like I said…it is nice to have visitors being we cannot get out yet.

Mitchell is doing well. He is now weighing 14 pounds 11 ounces. He was discharged at 13.3, so he has gained a lot of weight since being home. We have found out that Mitchell has his staph infection back so he is now back on antibiotics. He got this from the hospital and we thought that we got rid of it. However, I have heard that it is a bugger to get rid of. Other than that, he has been doing pretty well. His coloring turned a little the other day because he was tired and I was trying to do his trach cares…he got pretty mad at me. Nothing to get excited about. This is great; we don’t need any excitement around here.

Have a nice weekend,
Paul, Katie and Mitchell

Sunday, July 10, 2005 9:30 PM CDT

Mitchell seems to be doing better than ever. He is such a happy baby and we are so thankful for this. You will rarely see him crying.

I can’t believe how much he changes from day to day. This weekend Mitchell mastered rolling from his back to stomach. We are so excited about this, but it is hard because of his trach. He has to be constantly watched now because at any time he could roll over and bump his valve that is attached to the trach. He is starting to get frustrated because you can tell he wants to just crawl…he’s working on it but needs a little more upper body strength. Mitchell is also getting better and better with holding up his head. We have a little chair that helps strengthen his upper body and he is able to hold his head up enough to sit up in it. Tonight he actually sat in it without being held. But, he can only tolerate that for a few minutes. It is so exciting to see him do so many things. Everyday is more exciting!

This weekend Paul had a tournament out of town so Nana Trudy came on Saturday so I could get a little break. It was nice to be able to clean without having to worry about Mitchell. (Never thought I’d enjoy cleaning)

From time to time I remember that Mitchell can’t make a sound. We are getting use to it, but it is sad to think back and not really be able to even remember what he sounded like. A good friend told me that I should tape his cry and sounds (before we knew he was going to get the trach). At the time I thought it would be a good idea but never got around to it…now I wish I had. But, I am confident that with time Mitchell will learn how to communicate. He can make grunting sounds when he wakes up. I’m not sure where the sound is coming from but it is nice to hear something. We are starting to work on the sign language a little more each day. We will be working on Mom, Dad, Grandpa, Grandma, Eat, More, Kitty and Up. So far he will sign “up” once in awhile. We are sure that he will catch on quickly being he is so social.

Growing every day,
Paul, Katie and Mitchell

Wednesday, July 6, 2005 10:14 PM CDT

Well it has been busy, busy, busy around here. Mitchell is doing well. He was a bit crabby this weekend due to teething, but has seemed to get over that. (At least for now)

We are still working on nursing. We have a full time nurse ready to start as soon as her Minnesota license comes in and then gets trained. However, now we are waiting for the go ahead from the insurance. Once again this has been a very long process and very frustrating. Mitchell is doing so well at home, we are having a hard time getting approved for the care. Though Mitchell is doing very well here at home, he does need someone to be ready on a moments notice in case of breathing problems. Dr. Welle is helping us get the nursing care that we need.

We haven’t had much time to post new pictures, but hopefully will soon…

Till then,
Paul, Katie and Mitchell

Friday, July 1, 2005 10:21 PM CDT

Mitchell is back at home! They discharged him Wednesday afternoon and is back at home enjoying life. Sorry it took so long for the update.

We talked to Mitchell’s doctor about his progress. He is very happy with how he is doing. We did get the results from the head ultrasound. It showed that Mitchell does have some water on the brain. Right now it is minimal so we will not have to do anything about it. He will be checked out again in 3 weeks to see if there is a change. Dr. Welle seemed to think that it wouldn’t get worse. Other than that, he was very impressed with how Mitchell looked.

We are still working on nursing care. This has been very frustrating for both Paul and I. Though we did hire someone today and I am confident that she will do an excellent job. She wants as many hours as she can get, so I think we will pretty much have her full time. Even though we have “okayed” her, we are going to have to wait for some paperwork to go through and this may take up to 2 weeks. It has definitely been a long process.

Mitchell has enjoyed many visitors lately. He enjoyed meeting my cousin Anna. He had a lot of smiles for her and showed her how strong he is. He is also enjoying playing with Grandma Deb and will get to play with Nana Trudy later this week.

Enjoy the weekend,
Paul, Katie and Mitchell

Tuesday, June 28, 2005 10:45 PM CDT

Just a quick update on our little guy…
We took Mitchell in today so Dr. Welle could take a look at him. He is doing well, but seems to have some rattling in his chest and has had a few apnea alarms since he has been home. The apnea spells are at night, and nothing needs to be done, he seems to start breathing on his own. Dr. Welle is keeping him in the hospital for observation tonight. He said that his chest x-ray looks perfect, which is great! He will have a head ultrasound tomorrow morning because his soft spot is a little puffy. We think that this is due to the cpap pressure he is getting from the air compressor but we just want to make sure. We are hoping that Mitchell will be back at home tomorrow. He now weighs 14 pounds so the night feedings are definitely catching him up as far as weight goes.

We will write more tomorrow when we know more. Dr. Welle did think that he looked great and was impressed with how happy and active he is. The apnea alarms have him a little concerned being that this is something that has just started happening since he has been home. Once again he is puzzled. We hope that tomorrow brings good news and that we will all be home again soon.

Until Tomorrow,
Paul, Katie and Mitchell

Friday, June 24, 2005 5:06 PM CDT

Well we made it through the week. I have to say it has been a very stressful week. We are still having problems with finding nursing care for Mitchell. We did meet one nurse this week that I am really excited to have work with Mitchell. She seems to have a lot of experience with babies and traches and is about our age. She seemed to be excited to take care of Mitchell as well. The other nurse that we were going to have decided not to take the job. So, we are still in need of a nurse that would be willing to work nights. Though we are anxious to get someone trained in, there is no rush. We really want someone who truly loves taking care of babies and someone that we are confident in their nursing skills. It sounds like we will have some day respite starting next week.

We are still working on getting Mitchell on a schedule. (Again) He seems to think that his bedtime is 10:30…I guess I’d like it to be about 9:00. But, he is sleeping until 3 so I can’t complain.

Mitchell’s teachers came out yesterday and were very impressed with what they saw. They said that when hospitalized, usually babies/children stop developing for a short period of time. Mitchell, once again surprised them with some of his new skills. He is getting much better at reaching with both hands, scooches around the floor, can now roll from back to tummy (with assistance so he doesn’t bump trach), and smiles like there is no tomorrow. They were so happy with what they saw; it was fun to see them work with him again.

Though we are physically away from the hospital, doctors and nurses, we are not forgotten. Mitchell’s pediatrician never ceases to amaze us. He has called all but 1 day this week to check in on our little family. He will continue to call a couple of times a week to check up on how Mitchell is doing. It is nice to know that he cares so much about not only Mitchell’s health but Paul and mine as well.

Here are finally some pictures from home.

Doing well,
Paul, Katie and Mitchell

Wednesday, June 22, 2005 2:15 PM CDT

Well we’re home and it has been a whir wind ever since! Mitchell is doing great at home and is very happy to be here. In fact….he is so happy he is having a tough time getting to sleep at night. You can tell he is just way over stimulated by all of the “old” sights to see again. Once he gets to sleep, he has been sleeping until 3 and then wakes up about 6/6:30.
That first night was a tough one for me. Even though Mitchell slept well, I guess I probably only got a couple hours of sleep. Last night was much better. I think I am learning to trust the alarms he is on.

We are in the process of figuring out how the home nursing care is going to work out. It is clear that we need respite, but figuring out when we need it and finding someone to provide it is another story. So far we have met 2 nurses, we both liked them (as did Mitchell). Both have a lot of pediatric experience and both seemed to be drawn to Mitchell. However, it has definitely been a long and stressful process. Paul and I are working on the nursing schedule. I think that we have decided to try nighttime nursing. I was really having a tough time seeing someone else take care of Mitchell during the day when that is why I decided to stay home. With Mitchell’s alarms it is almost impossible to get a great night sleep. They really haven’t gone off for him, but have had many false alarms. The night time nursing will let both of us get a good nights sleep so we can spend good quality time with Mitchell during the day instead of being so tired. I am also hoping that we can get a 4 hour shift a week so I can run errands, go to a baseball game or just get out of the house. We are guessing that this may start as early as this weekend. Right now we have a training nurse coming in from 12-6 everyday. She has been helpful with setting things up and watching Mitchell while I take a nap.

It has been such a busy week. I am really looking forward to getting this nursing care figured out and to actually get on a schedule. Right now things are a little crazy with potential nurses coming in and out, getting Mitchell use to being home again and us getting use to having him home. Though it has been stressful, we are thankful that he is finally home. Hopefully he wont have to go back until his cleft surgery on August 15.

Finally Home,
Paul, Katie and Mitchell

Monday, June 20, 2005 7:50 PM CDT

Mitchell is home!

Saturday, June 18, 2005 10:38 PM CDT

Mitchell has had a pretty good weekend. We are holding our breaths, as discharge should be soon. (Though nobody is telling Mitchell that as we all know what happens when he finds out) We are still struggling with gaining weight, but are hoping that bringing him home will help.

Mitchell is finally acting like himself. This is the first day since last Friday that he has really felt up to playing and smiling all day. Paul and I got to take Mitchell out on another “car ride” for a half hour today. As we left Paul said to the nurse, “Well, see you in a couple months for his cleft surgeries.” The nurse smiled knowing we’d make our half hour deadline but wouldn’t blame us if we never came back. Mitchell did well on his “test” and ended up having a great afternoon.

Mitchell’s pediatrician tied off his little extra finger about 2 weeks ago and we are waiting for it to fall off. It is so close; the doctor said that it would take longer than we would ever guess!

We are getting excited for Mitchell to come home. It has been a long haul, I think the last week has been the toughest as we just have to wait until they feel comfortable letting him go. Even though it has been a long month, the care that Mitchell gets at MeritCare is great. We have gotten to know many of the nurses pretty well and it is so fun to see how much they enjoy Mitchell. They call him their “respite” because he is so good about 90% of the time. They really enjoy popping in to get a smile from him when they are dealing with extremely critical kids. It is nice to see that even though they want him to come home, you can see on their faces that they are going to miss him.

Hopefully our next message will be saying that Mitchell is home. We pray that there aren’t any surprises in the next couple of days.

Taken it easy,
Paul, Katie and Mitchell

Thursday, June 16, 2005 10:39 PM CDT

Today Mitchell is 6 months old! It is hard to believe that he has already been with us for that long! Though in ways we can’t imagine life without him.

Mitchell has had a few good days here and we are hoping they continue so we can make it home. As of now we are looking at Monday for the discharge date…that is only if Mitchell behaves himself this weekend.

Today I successfully put in a ng tube. I can say that this isn’t a very fun thing to do. I’m not a very squeamish person and have no problems doing everything else, but for some reason I cringe the entire time while attempting the ng placement. The ng tube will be temporary. We will use it for night feedings and to get extra air out of Mitchell’s stomach. Mitchell is still taking the bottle, but he was at a “stand still” for gaining this month while in the hospital. He was admitted weighing 13.3 and now he weighs 13.7. He just gained those ounces this week. We are hoping that in about a month or so we will have him “caught up” to where he should be.

The doctors continue to comment on how Mitchell surprises them. The ICU doctor told me that if he looked at Mitchell’s diagnosis and chart and looked at him, you would never believe it was the same child. He said that he is cautiously optimistic about Mitchell and what is in store for him.

Pray for good behavior!
Paul, Katie and Mitchell

Tuesday, June 14, 2005 10:56 PM CDT

Mitchell has had a few good days since his episode on Saturday. We found out that he has strep so he has been on antibiotics since Sunday and is slowly getting back to his old self. Though you can still tell that he isn’t 100% yet.

The pediatric cardiologist looked at him yesterday and ran some tests. Good news, Mitchell’s heart seems to be working as it should. This is a relief to us!

The doctors think that Mitchell’s episodes are due to something going on with his nervous system. I have asked the doctors to find some information on it so we can read up. Evidentially sometimes his nervous system takes over and is causing his breathing problems. They hope that he will out grow this but it can take anywhere from 1 to 3 years. In the meantime we are just suppose to keep doing what we are to help him get through the episodes. We are hoping that once we get him home his episodes wont be as frequent or as severe as they are in the hospital. We hope that once we get him back into the low stress environment and with close monitoring of his humidity in his trach his episodes will be kept at a minimum.

Mitchell will have his 6-month shots tomorrow. I’m guessing that he will be pretty sleepy all day.

We are getting anxious to get him home. Being it sounds that there is nothing they can do about the episodes, getting him home will be the best thing for him.

Hopefully home soon,
Paul, Katie and Mitchell

Saturday, June 11, 2005 11:00 PM CDT

Once again Mitchell was unable to come home today. Mitchell really had a tough afternoon yesterday. It would be a very, very long story to type, so I will try and keep it short and to the point.

The nurse said that we could take Mitchell on his “test car ride” whenever we were ready. So, we got Mitchell ready only to find out that we had to wait. We waited and waited until 1 ½ hours later when they finally let us go. During this time he was on straight oxygen and a small “bubbler” to get him a little moisture. (this set up is just for travel) Paul and I kept telling the nurses that Mitchell just wasn’t feeling well and that we didn’t think that this was a good idea. Mitchell did pass his car test with flying colors. Anyway, later that night I had to go home to help the home health equipment guy get Mitchell’s equipment ready for him to come home. Grandma stayed with Mitchell…little did she know that our little Mitchell would take years off of her life. Mitchell and Grandma were playing and all of a sudden he couldn’t breathe. (we think he had a mucus plug due to being on the oxygen for 2 hours) Mitchell had the worse spell he has ever had. I got to the hospital just as he was done with his spell. Mitchell was very, scary pale. (as was Grandma) I could tell on the nurse’s face that this wasn’t just any spell. Good news, Mitchell managed to come out of the spell but was very lethargic the rest of the night.

Mitchell was also very lethargic today but by late afternoon he seemed to be getting back to normal. Dr. Welle is very concerned as to the causes of Mitchell’s episodes. Mitchell will have a complete examination by the pediatric cardiologist and pulmonologist. We are hoping to get to the bottom of why he is still having episodes even though he has the trach.

We are asking that you keep not only Mitchell, us, and the medical staff in your prayers; but also all of the families in the PICU. Mom and I were able to talk to one father whose 4-year-old son is in a coma because of drowning. He also shared that his wife had passed away 2 years ago. This father has been through so much; please keep them in your prayers as well.

We pray for some answers,
Paul, Katie and Mitchell

Friday, June 10, 2005 9:05 AM CDT

Well what can I say…Mitchell is proving to be his own person once again. When getting to the hospital yesterday we were very optimistic and excited to hear that indeed Friday was the day. Mitchell even had a scheduled “date” with Dr. Welle to make a “test drive” yesterday evening. Yes, Mitchell’s pediatrician was going to get in the car with Paul, Mitchell and myself and drive around the block for 10/15 minutes to see if Mitchell could safely make it home. Once again, I cannot say enough good things about Dr. Welle; he is a very dedicated doctor.

Well, we never made it on our “date” with the doctor. Mitchell seemed to be sensitive yesterday evening. Paul changed the trache, that went well but our timing was not good. Mitchell was hungry and tired and he cried a lot. Dr. Welle came in to give him a look over before our big car ride…he looked good. All he had to say was “HOME” and then Mitchell threw us the curve ball we were all hoping he wouldn’t throw. The doctor went out and I had to suction Mitchell. He was pretty upset and then had an episode. It wasn’t so bad…just a little dusky. But, I grabbed the amboo bag and bagged him while mom went to get the nurse or doctor. By the time they came back, Mitchell was back to “normal”. However, not for long. Mitchell then had 2 more episodes, each one getting worse. Finally he looked good and was resting. When the doctor caught wind of this, he came in to check on Mitchell. Mitchell took 1 look at Dr. Welle and gave him a BIG smile. I could see the frustration in Dr. Welle’s eyes. Not many kids can have 3 breathing episodes in a matter or 10 minutes and smile at the doctor afterward.

Needless to say, Mitchell wont be coming home today. I think that we have figured out the reason for his episodes. Mitchell swallows way too much air. When this happens, it is hard for him to breathe. Dr. Welle and the staff will be training Paul and I today on how to put a tube into Mitchell’s nose that will go down to his stomach. (NG Tube) When we do this, we will be able to pull the air out of his tummy so he doesn’t have such a tough time. This tube wont stay in, we will just insert it as needed. (hopefully not often)

Though Mitchell’s episodes were a minor setback, it was good training for what it may be like at home. I was happy with how we reacted to his breathing difficulties. Both Grandma and I stayed pretty calm…the nurses said that they were pretty impressed. During this time, Paul had run home quick to get Mitchell’s traveling oxygen for his “car date”. He was surprised that within 15 minutes that he was gone, the “car date” was cancelled.

We’ll try for another day,
Paul, Katie and Mitchell

Thursday, June 9, 2005 1:28 PM CDT

Boy what a busy week it has been. Between spending time with Mitchell and trying to make the most of our babysitter, we haven’t had time to update everyone!

Paul and I have been working hard at getting to know the ins and outs of trach care. I changed his trach the other day for the first time and it went well. Mitchell didn’t even cry or wiggle around. (I think he was trying to impress the nurses) Paul will change it before we go home. Once we get home, it will need to be changed every two weeks.

Mitchell is doing well. The doctor is trying to get him to come home tomorrow. There are just so many things to get lined up before he can come home. (Mainly supplies) Slowly we are getting there. Now we are just holding our breath hoping Mitchell doesn’t throw us any curve balls!

Nana Trudy and Papa Dick came to visit Mitchell this week. They had fun seeing him so happy. Grandma Deb came up yesterday and will be spending a couple days. It’ll be nice to have some extra hands to help with the transition of bringing Mitchell home.

Write more later,
Paul, Katie and Mitchell

Saturday, June 4, 2005 10:37 PM CDT

Katie and I both got to spend a lot of time with Mitchell today. My school year finished up Friday and the school baseball season came to an end as well last week, so it was just fun to lay around with the little guy all day without worrying about other responsibilities. I really had a great year teaching a super bunch of students, and the Spud baseball team was an outstanding group of people to coach. Baseball is such a nice way for me to relax and the hard work the kids put into the game makes me so motivated to share with them an activity that I love so much. I’m already looking forward to continuing working with them this summer when we start the legion season on Monday. Not only were the kids I spent the days with such a motivation to me, but also the Moorhead High and Middle School staff and administrators were very supportive to Katie, Mitchell and I. Their gifts and tributes are very much appreciated, but the ability to share my feelings with friends means the world to me. I am so lucky to have such a rewarding job working with such great and caring colleagues. Thank you for listening and your continued support.

Mitchell had an outstanding day of playing, eating, sleeping and breathing. In fact we are looking forward to sleeping over next week and taking our little guy home soon. The trach cares are getting easier for us to do and the last thing we need to do before Mitchell comes home is be able to change the trach ourselves and be comfortable doing it at home as well. Mitchell was a TV star today when the NBC affiliate KVLY 11 ran a ten-hour Children Miracle Network telethon to raise money for the Fargo Merit Care Children’s Hospital where Mitchell has been staying the last couple weeks. Katie and I got to tell Mitchell’s story on TV and were able to thank all the people who have helped us care for him. We were also able to ask viewers to donate money to the hospital so they can continue to give state of the art care to little ones with the ability to keep the children and there families comfortable during such a trying time.

Slowing down but staying busy,
Paul, Katie and Mitchell

Thursday, June 2, 2005 10:31 PM CDT

Mitchell seems to be getting use to having his trache. His breathing seems so much better and yet he still has the occasional episode. We are pleased with how easy his breathing is but are a little disappointed that he is still having his episodes.

I do think that once we get him home and more relaxed, he will have fewer episodes. At least that is what we hope. He still seems to be having trouble when in his car seat. Because of this I think we will be going to what is called a “car bed”. This is for babies with respiratory issues that cause them to not tolerate the typical car seat. It sounds like we will not be traveling with Mitchell for a while so this shouldn’t be too much of an issue.

We are talking about getting some home health care for Mitchell. Right now he is scheduled for 5 days a week for 6 hours a day. This seems like an awful lot to me especially since Paul will be home for the summer, but we are willing to try it and see how it goes. A RN will come in and help take care of Mitchell, as we need. This will also give us some respite, which is very much needed. I am excited to be able to go out with Paul while a nurse takes care of Mitchell. Like I said, I’m not sure if we’ll need the 6 hours a day, but the doctor said he likes to order more time than he thinks we’ll need because it is easier to scale back rather than asking for more.

His pediatrician is anxious to get him home and out of the PICU. I think he realizes that Mitchell does a lot better when he isn’t so stressed. (Like being in the hospital)

Nana Trudy came up today. She had a good time seeing Mitchell and Mitchell loved giving her smiles. Mitchell’s Godmother, Missy came up as well. I think that it helps to actually see Mitchell and see how happy he is. I know that it makes my life a lot easier to see him happy. He truly is a wonderful baby. I know I’m a little biased being his mom, but you can tell by the look in his eyes and smile that he is happy.

Still working on the breathing,
Paul, Katie and Mitchell

Tuesday , May 31, 2005 10:00 PM CDT

I had a good day today. The nurses are learning that I am the boss and that when I want something…I want it NOW. I don’t mind being in the hospital again, where else can you have a bunch of ladies constantly around your crib trying to make you laugh? I really have all of them wrapped around my finger. Every time Mom and Dad leave they get excited because they know that they get to play with me!

The doctor came in and switched my trach for the first time today. I really watched him closely to make sure he was doing it right. I thought that it would hurt, but it wasn’t so bad. I heard him tell mom that next time her and dad get to do it! Believe me, I’ll be watching them closely too!

Life seems so much easier now that I can breathe better. I like to smile a lot more and eating is even a little easier.

Today my old friend Susie from the NICU came to visit me. She is the one who helped me learn how to eat. I heard Mom bragging about everything I can do now. I looked at my mom and saw how happy she was. I think she was smiling bigger than me…and that is big.

Even though everyone seems to love playing with me, I still can’t wait to get home. I’m kind of starting to get bored lying in my crib all the time. I can’t wait to get home so Mom and Dad can walk around with me.

Life is good,
Mitchell, Mom and Dad

Monday, May 30, 2005 10:16 PM CDT

Mitchell had another great day. Again, he was all smiles! The doctor decided to do an EKG on Mitchell because his heart rate had seemed to be a little high yesterday. The cardiologist hasn’t read it yet, but it seems to have come back normal. We will be talking to his pediatrician tomorrow. He took a few days off this weekend to spend time with his family. (Definitely disserved!)

There really isn’t a lot new today. Hopefully we will get an idea of when Mitchell will be coming home when we talk to his doctor. We are hoping he will be home this weekend or early next week. The social worker is working on getting some nursing help for us. It looks like we will have a nurse come in 5 days a week for 6 hours total. (a little over an hour per visit) This will be helpful at first as we are still learning how to take care of Mitchell’s trache. The hope is that we will get down to only a couple of visits a week after we get more comfortable with everything.

We hope that everyone had a nice long weekend. Paul and I managed to get away from the hospital today to do things around the house. We finally got the yard mowed and vacuumed the house!

Take care,
Paul, Katie and Mitchell

Sunday, May 29, 2005 10:26 PM CDT

What a difference a night can make! Paul and I went in this morning to find Mitchell still sleeping. However, within a few minutes we were pleased to see that he was awake and smiling and laughing. Once again the nurses came to see how this little boy that was struggling so hard only 12 hours earlier was now the happiest child in the PICU. It was as though nothing had happened. He was taken off of the ventilator and was happy all day. I think that this was actually his best day of breathing. Many times my heart jumped as I looked down and couldn’t see his chest rising, only to find that this is how it is suppose to be. Mitchell’s breathing was great. He is “ordered” to take 4 ounces every 3-4 hours and is doing it great. We added food coloring again to make sure he wasn’t aspirating, and once again found no signs of aspiration. Paul and I really had a nice day with Mitchell today. It was fun to see him so happy after such a scary night.

The on call doctor thought that Mitchell was put on his “artificial nose” for too long yesterday and that is what caused his episode. This is the device that has the filter that should humidify the air he breathes however they think that it just wasn’t enough humidity for him. This is why he had the thick mucus and eventually a “mucus plug” that temporarily blocked his airway. I am so relieved that this happened in the PICU, as I know that I would have tried putting him on the “artificial nose” for an entire day at home. It is a good that they are testing his limits so that we know what they are before we bring him home. Mitchell was on his other valve today that blows a little extra air into his trache and it also is connected to a bubbler that gives him a little extra humidity. He does so well on this device.

We hope everyone is enjoying the Memorial Day weekend. We are trying to rest up as much as possible as we are thinking Mitchell may come home late this next week. We will have to see what his doctor says on Tuesday. My friend told me about a website that shares stories of trisomy 13 babies. I think it is worth checking out; it gives us a lot of encouragement and hope. www.livingwithtrisomy13.org I’m thinking about putting Mitchell’s story on it.

Many Smiles,
Paul, Katie and Mitchell

Saturday, May 28, 2005 9:35 PM CDT

Mitchell had a good time playing with Grandpa and Grandma yesterday and this morning. He had a lot of smiles! He also had fun teasing our friend Sally today as he smiled during her entire visit…that is, until she brought out the camera! It was so fun to see him having so much fun.

Yesterday Mitchell had his hearing test. The audiologist found that Mitchell has severe hearing loss in his right ear and mild to moderate in his left ear. The hearing problems seem to be in the middle ear. Because he had so much fluid in his middle ear, the audiologist was unable to tell us if his hearing loss would be temporary or long-term. We will have to re-test in a month. If he gets the same results, Mitchell will be fitted for hearing aids. We are so thankful that the problem lies within the middle ear, meaning that it should be able to be somewhat corrected.

We have been adding blue food coloring to Mitchell’s milk to see if he is aspirating. So far there have been no signs of aspiration. This is checked by suctioning him; if we would get blue mucus out of his trache, it would mean that he is aspirating. Leave it to Mitchell to surprise us…though we have not suctioned anything blue; when I was feeding him yesterday I noticed that blue milk was coming out of his ear! The nurse looked at me like I was crazy when I told her! When Dr. Welle came to look at Mitchell, he said that though it isn’t very typical, it could happen because of his cleft palate. This may explain all of the fluid in Mitchell’s ears.

Mitchell had a couple of very good days but had a rough time tonight. We aren’t really sure what caused him to have a tough time, but the doctors are watching him closely. He seemed to be really having hard time breathing. We suctioned him a number of times and got a lot of really thick mucus. Mitchell was very upset and this made his breathing worse. The nurses called the on call doctor and he came in to look at Mitchell. He decided to put him on the ventilator tonight to give Mitchell a little break from breathing. They are trying to keep Mitchell calm tonight to get his breathing under control. They gave him a little sedation but when I checked at 9:00, he seemed to be sleeping and relaxed so they will hold off on giving him more sedation medication unless he gets restless again. We will keep you updated on his condition. As of now he seems to be pretty stable when calm and relaxed. Because of the recent breathing troubles we have asked that there be no visitors until he is able to keep himself calm. Please continue to pray for Mitchell. He is a strong willed little guy, but at times his strong will and temper gets him into trouble. He is one on one with a nurse tonight; we are confidant that he is in good hands.

Keep praying,
Paul, Katie and Mitchell

Thursday, May 26, 2005 10:55 PM CDT

Mitchell had another good day. He was pretty sleepy today, we are wondering if he maybe over did it yesterday.

We are impressed with how Mitchell is breathing. He was on the “artificial nose” today and did well on it. This does not blow the air into his trache, it just filter and humidifies the air he naturally breathes in. He will be on the valve that is attached to the CPAP most of the time, but we are trying to give him time on the “nose” in order to get his lungs stronger.

Grandma Deb and Grandpa Dave saw Mitchell tonight. They were impressed with how much better his color is and how much easier he is breathing. We will be talking to the pulmonologist tomorrow. (I will write more then)

Here are some pictures of Mitchell. His coloring may look a little pale, but it is just the lighting.

Till tomorrow,
Paul, Katie and Mitchell

Wednesday, May 25, 2005 10:14 PM CDT

Mitchell had his best day yet since he has been in the hospital. He was smiles all day. Mitchell has lost a little weight, but seems to be starting back with eating like a pro. Dr. Welle saw him eat today was quite impressed with how well he does. We are guessing that gaining weight may be a little easier for Mitchell now that he isn’t burning as many calories breathing.

The respiratory therapists have been playing around with different devices for Mitchell’s trache. They are trying to figure out what he can tolerate as far as needing oxygen and pressure. Today he got down to room air and did quite well. We are expecting that he will need to be on a CPAP machine pretty much at all times for awhile. Again, this machine blows constant pressure into his trachea, which helps keep that lower part of his trache open. (The trache itself cannot reach this part of his trachea) There is a big difference if Mitchell is taken off of the CPAP machine, he works extra hard to breathe and after awhile his oxygen saturation goes down due to that bottom part of his trachea collapsing. We are hoping that with time Mitchell will be able to be strong enough to just have the CPAP at night. His doctor is very optimistic that this will happen.

It was so nice to see Mitchell happy today. I really enjoy seeing how the nurses and doctors interact with him. I find it amazing that it seems anyone who comes to meet Mitchell is instantly drawn to him. As a mom this makes me so proud. I don’t know what it is about our little boy, but he has seemed to capture the hearts of so very many people. I think I say this in a lot of our entries, but Mitchell has taught us so much about what it means to live, be strong and most of all, love. Everyday we are so proud to say that he is our son. I promise that I will get new pictures of Mitchell put on tomorrow!

Keep moving forward,
Paul, Katie and Mitchell

Tuesday, May 24, 2005 10:25 PM CDT

Mitchell has had a couple of good days. He is starting to get used to the trache and it is becoming less painful to tolerate. His activity has really started to pick up and he’s getting back to his playful self. It is hard to pick him up though with the CPAP tubes that are connected to his trache, but Katie and I are becoming more comfortable working around them. Mitchell is starting to eat better and the trache doesn’t seem to be a hindrance to being able to feed. Once the pain goes away feeding him won’t be a problem at all. It is still hard for us not to be able to his cries when he needs something, but Mitchell is so animated that it is becoming easier to tell if he is in pain, just uncomfortable or hungry. Mitchell did get to spend an hour off the CPAP machine today, which makes it easier for him to play and easier for mom and dad move him around so he can do what he wants. The CPAP is there to help keep is trachea open by giving him a little extra air when he breathes, but it isn’t essential for breathing on his own. Hopefully with time it will help the trachea strengthen to it’s correct anatomy.

The next steps are for Mitchell to become pain free, get used to the trache and eat enough food to grow. For Katie and I it will be to learn how to keep the trache working correctly and clean, as well as being able to run the home CPAP machine. This will take some time and it’s hard this time of the year for me because school is finishing up and baseball is in full swing, but I have great support from the school and the team so I can spend as much time as needed with my family. Katie is getting a bit of cabin fever with all the nice weather and she also looks forward to the day Mitchell is strong enough to come home so she can get a little more fresh air. Mitchell’s grandparents will be visiting in the coming weeks and it is our hope that they also will learn how to take care of Mitchell so we can spend a little time to ourselves. We’ve been impressed at Mitchell’s progress so far and look forward to each day he gets stronger.

Little steps forward,
Paul, Katie and Mitchell

Sunday, May 22, 2005 10:04 PM CDT

Mitchell went into surgery today at 7:30 for his tracheotomy. They had him intubated and had an IV in by 8:00. We were very lucky that our friend Jenny “hooked” us up with an outstanding nurse anesthetist that works wonders with intubating and putting IVs in small babies. The surgery was complete by 8:30. The ENT said that the surgery went as planned and there were no surprises.

It was a long and hard day for all 3 of us. It was so hard to see Mitchell in so much pain. The hardest part for Paul and I was when he tried to cry for the first time and couldn’t make a sound. I can’t even explain the pain we both felt seeing Mitchell with tears running down his face and yet no sound coming out. Though we knew that this was going to happen, nothing could have prepared us for this. I think it was the worst feeling we’ve ever had. We felt so helpless. Though it got a little easier as the day went on, I still get tears in my eyes every time he tries to make a sound.

Mitchell’s tracheotomy cannot help him totally. His trachea is still collapsing towards the bottom and so he is also on a CPAP machine. This constantly blows air in him, helping him keep that bottom of his trachea open. He will go home on a CPAP machine.

Along with the tracheotomy he also had tubes put in his ears. The ENT said that he had a lot of thick fluid in his ears and that he thought that he should be able to hear a lot clearer.
He will have a hearing test this week to see just how much he’s improved.

Mitchell is doing well after surgery. He did have one breathing episode today in which they had to assist him with breathing. We are unsure of why this happened but it may be a combo of him being upset and also being on pain medication. As the day went on, he seemed to be getting a little more used to the trach. By tonight, he had that little glimmer back in his eyes and was beginning to wiggle around in his crib. Though he hasn’t started smiling yet (I don’t blame him) I am waiting patiently for that moment and am sure there will be tears from me.

I cannot say enough good things about his pediatrician. He has spent so much of his “off duty” time checking in on Mitchell these last few days. We are so blessed to have such a gifted man watching over our little boy. Though we were not in when he stopped by today, the nurse said that he was very pleased with how Mitchell was breathing.

Please continue to keep us in your prayers as our little guy recovers. We are praying that as days go by he continues to be the strong little boy that we are both so proud of.

With love,
Paul, Katie and Mitchell

Saturday, May 21, 2005 7:01 AM CDT

Well, it has been a long couple of days for Paul, Mitchell and myself. We have gotten the results from all of the testing they have done on Mitchell and we have had some difficult decisions to make.

Both the CT Scan and Scope showed that Mitchell’s trachea is obstructed almost 100%. There are so many questions that go with this finding. How didn’t we notice this until his pre-op? Well, his doctors have been asking us this over and over again. The only thing we can say is that we work so hard at keeping Mitchell as calm as possible when at home so he doesn’t have to struggle with breathing. His teacher was even surprised to hear that the trachea malaysia is getting worse because all of us thought his breathing was getting better. The other big question is, how was Mitchell able to breathe? Well, I guess I thank God for that. Seeing how closed his airway is, I have no idea how Mitchell is and was able to breathe as well as he was/is. And…to be as active as he is. During the scope procedure, Mitchell’s trachea even hugged around the scope! During this time, his oxygen saturation never dropped once! Believe me, the pulmunologist was scratching his head in disbelief as he was telling us. Even though he was able to keep his saturations up during the procedure, it is clear to us now how hard Mitchell is working to breathe. I believe we have caught this at just the right time, as I can see him having to work harder everyday. (I’m sure the stress of being in the hospital doesn’t help) The doctor says, “trachea malaysia doesn’t get worse, it can only get better.” Well, our little Mitchell has proved him wrong (once again) and for this he is very frustrated. They say that this due to his syndrome.

Here is the hard part. Because of Mitchell’s struggles with breathing and his airway is clearly blocked, Paul and I see no other option but to have a tracheotomy done on Mitchell. This will be done as soon as the OR has an opening. Though this is the last thing we wanted for him, there is no doubt in our mind that this is what he needs. The Ear, Nose and Throat doctor will come and look at Mitchell this morning and let us know when he will be able to do the procedure. We are trying to look at the positive side of having a trache put in. Mitchell has done so well without being able to breathe 100%; I get chills thinking of how he will strive when he will not have to worry about breathing. Hopefully, this means no more episodes. The doctors again scratch their heads in disbelief that he was able to come out of all of the episodes he was having.

Mitchell’s cleft surgeries: We will be rescheduling his cleft surgeries for when he is about 9 months old. Dr Lamb will do both the cleft lip and palate together. With Mitchell having a trache in, the surgeries should be A LOT easier on him. They will not have to intebate him and so they will have direct access to his airway. Really the only reason they do them separately and the lip first is for cosmetic reasons. Paul and I have told the doctors over and over, we do not care about this. Eventually we want it repaired, but we want it repaired when it is best for HIM and not for his looks.

Paul and I are doing fine. We were able to go out for supper last night and we both spent the night at home. It was so nice to just have time to ourselves and to talk things through. I can’t imagine going through this with anyone else. Though for some this could be a big stress on a marriage, it has only brought us closer. I know with Paul beside me, we will get though all of this. Between Paul and looking at Mitchell’s smiling face, it is all I need to remember my faith in GOD. Mitchell amazes me on how much he has gone through and yet he wakes up EVERY morning with a smile on his face and laughing. This is more than enough to make me wake up every morning with a smile on my face as well. We love you all and thank you so much for all of your love and prayers.

Please keep praying,
Paul, Katie and Mitchell

Thursday, May 19, 2005 11:47 PM CDT

Mitchell went in for his pre-operation check-up Wednesday afternoon with Dr. Welle to see if he is healthy enough for Monday’s cleft surgery. Dr. Welle didn’t like what he was hearing in Mitchell’s breathing so he ordered an x-ray of his chest and saw that Mitchell was holding too much air in his lungs. He also noticed that Mitchell’s breathing was more labored and his chest seemed to hyper-expand when trying to take in air. Dr. Welle called the pulmanoligist (lung specialist) and they came to the conclusion to refer Mitchell to the Pediatric ICU to run some tests. Mitchell was put on an IV last night and this morning he was given a CT scan to get a better look at his trachea. The doctors found that the trachea malaga(?) is getting worse because more of the airway is becoming collapsed. When Mitchell was less than a month old, the part of the trachea that splits off into the lungs was having a difficult time staying open, which causes difficulty in breathing. The CT scan showed that the upper portion of the trachea was now showing some of the same effects of weakening. Dr. Kantak will perform a broncascope(?) tomorrow morning to get a first hand look at the anatomy of the air way by running a camera down the trachea to see how the area is developing. On Monday Mitchell will undergo an upper GI test where the doctors will take another look at how Mitchell uses his esophagus to eat and transfer liquid. They do this test because they are also very concerned with the “rattling” they hear and want to check if the little guy is continuing to aspirate liquid into his lungs. When the results of the new tests are in, Katie and I will sit down with the doctors to discuss possible solution to the problem. As of now Mitchell will stay in the PICU until at least next Wednesday and the cleft surgeries will be put off indefinitely until these new problems are corrected.

Katie spent last night at the hospital with Mitchell and will try to make it home tonight if Mitchell goes to sleep, but when I left at 11:00 he was wide awake and playful after a full day’s rest after being sedated for the morning CT. I can’t believe how strong my wife is and how tirelessly she takes care of our son. Mitchell and I are blessed to be in constant care of such a loving and giving person. She has worked hard at keeping our son healthy enough for his surgeries that it is difficult for us to see the cleft date pushed back again. We feel so bad for Mitchell and the new problem he has to deal with. Katie and I struggle with seeing our boy back in the ICU and pray that he doesn’t have to go through much more. Mitchell on the other hand is his same old fun loving self that you see in the pictures. It doesn’t take him long to recover from the needle pokes and nurse exams. He’s smiling just as much as ever and his fun loving attitude is all the strength we need to take on the new challenge.

Please pray for us,
Paul, Katie and Mitchell

Monday, May 16, 2005 7:49 PM CDT

Today I am 5 months old; can you tell how much I’ve grown? I had such a good day today. I was in a very good mood for my mom and my teacher. I thought that I would smile a lot for them today. Mom tells me that she is going to miss my smile and so she is trying to get me to smile as much as possible this week. (You should see the things she does to try and get me to smile)

Mom and Dad are letting me get plenty of rest this week so I am ready for my big day. I think that they are getting a little nervous; I seem to be getting twice the hugs and kisses this week. That’s okay; I hear that’s what Moms and Dads are supposed to do.

Lets see, the last time I wrote I was only 4 months old. So much has changed! I can reach and grab things now. My left hand is still a little rusty, but we’re working on it. My mom gives me a little cereal now before bed. Sometimes I eat 5 ounces of milk…at one sitting! I sleep a little longer than I did when I was only 4 months old. I even am starting to take fewer but longer naps. I still like walking around the house but I REALLY like to bounce. I also like to swing in the blanket! Oh, I almost forgot, I can roll over now. That comes in handy when Mom and Dad say it’s tummy time. I also like to chew on everything and I drool a lot!

It has been a busy 5 months!
Mitchell, Dad and Mom

Wednesday, May 11, 2005 10:23 AM CDT

We had a nice weekend and I had a nice 1st Mother’s Day. We stuck around here, but Paul made me lunch (w/dessert) and did ALL of the laundry (including folding). It was very helpful.

Mitchell is doing well. He still (yes still) has that horrible diaper rash. We have tried EVERY cream that they make for diaper rash. It seems like it almost goes away, and then it comes back. Mitchell gets plenty of diaper-less time…I’d say almost 70% of the day. (Needless to say I’m doing a lot of washing) I talked to his doctor again yesterday and we are now using an antifungal powder and putting TONS of cream on his bottom. The doctor said he wants it to look like an overly frosted cake. We have also started giving him cereal once a day. The doctor said that Mitchell’s stools are so acidic because of the hypoallergenic formula he is on and this is the reason for the rash. Hopefully the cereal will help.

Cereal…wow. Mitchell let me sleep until 4 this morning! I gave him the 1 cereal bottle before bed hoping that it would get him to sleep longer. It worked! Then, he woke up about 8. We both got a good night sleep! I hope it continues.

Mitchell is smiling more and more everyday. Weird as it may sound…the more he smiles, the more I’m going to miss that smile when he has his surgery. I guess we’ll get use to the “new” smile.

Mitchell has been doing GREAT for his teachers. He is fine-tuning those skills he has developed and working on new skills daily.

Mitchell has been breathing well since his K-mart episode. We have figured out that he seems to only have trouble when he is sitting up. All of his episodes have been when we was sleeping in his car seat or chair. I will talk to his doctor about this at his pre-op. check up.

Write more later,
Paul, Katie and Mitchell

Friday, May 6, 2005 5:26 PM CDT

It’s hard to believe that a year ago we had started telling people we were expecting! Boy have we learned a lot in a year! We would like to wish our Mothers, Mitchell’s Grandmothers a very happy Mother’s Day. We are all so lucky to have all of you in our lives. We couldn’t ask for better Grandmas for Mitchell.

Mitchell had 2 really good days with his teacher this week. He is progressing nicely. He was also weighed on Wednesday and he is now up to 12 pounds 11 ounces. He is gaining almost an ounce a day, which is where they want him.

Mitchell did have a tougher time breathing this week. It wasn’t all the time, just a tough time here and there. We tried going to the mall on Wednesday, and he really had labored breathing. I guess I felt more comfortable if he was home, so we went back home. Today we tried it again. He did well at the mall, but then had a little breathing episode at K-Mart. I guess the boy just doesn’t like shopping. I’m not really sure why he is having the episodes. He doesn’t stop breathing completely, his chest still rises. Something seems to be blocking his airway. When I pick him up and tip his head back a little, he gasps for air and starts breathing again. We have not had to use the oxygen, as he is able to recover within a few seconds. Needless to say, between Paul’s baseball and Mitchell’s breathing, Mother’s Day gifts (Grandmas) will be a little late.

Have a nice Mother’s Day weekend!
Paul, Katie and Mitchell

Monday, May 2, 2005 8:38 PM CDT

Paul, Mitchell and I had an outstanding weekend. We had just the right mix of rest and company. Mitchell enjoyed meeting his Great-Grandpa Jim and Sandy! He even laughed a little and did not cry at all. They were very impressed. Grandpa and Sandy came Saturday afternoon and we were able to enjoy a wonderful steak dinner prepared by Paul. We timed it just right and as we ate, Mitchell took a little nap. It was so nice to see and talk to them, as we haven’t seen them since last summer.

The rest of the weekend we spent resting. Mitchell had the same idea as I did…we spent the majority of Sunday sleeping on the couch. It was so nice to start today out being fully rested.

Mitchell had fun with his teacher today. He was still a little sleepy…we are hoping he isn’t getting sick. But, he still tried to play a bit. He seems to be looking around more, and not always up at the ceiling. When on the floor, Mitchell seems to use his left hand just as much as his right. We are working on using both hands because he was really favoring his right side.

Mitchell continues to eat well. He did spit up this weekend, but he sounded pretty congested, so I think it was needed. Mitchell will get weighed tomorrow. I am anxious to see how much he weighs. Last time he was weighed he was 12 pounds 2 ounces.

Weigh in tomorrow,
Paul, Katie and Mitchell

Friday, April 29, 2005 8:49 PM CDT

Mitchell has decided that he doesn’t like to wait 6 hours before eating during the night. He did really well the first couple of nights, but now he is deciding to get up every 3 to 4 hours. It has been a long week. Paul told Mitchell this morning before going to work, “Mitchell, you had better weigh 14 pounds after this week!” It actually isn’t that bad, I guess we were just getting use to getting a little more sleep. I think he is going through a growth spurt; he is eating like never before! (and keeping it down)

Mitchell has had a pretty good week. He had 2 good days with his teachers. We are continuing to practice rolling over…at times it’s hard to keep him on his tummy. I am working extra hard to get Mitchell attached to a stuffed animal. Right now he uses his pacifier and hands in his mouth for comfort, once he has his surgery his arms will be in arm restraints. This will be so he cannot touch his mouth and nose. Let me tell you, it will be an interesting recovery. I’m hoping that if I can get him to like his little stuffed animal, it can replace the nuk.

Mitchell will meet his Great Grandpa Jim and Sandy tomorrow. We are all excited to see them, as we haven’t since last summer. We will write an update probably on Monday.

Have a nice weekend!
Paul, Katie and Mitchell

Tuesday, April 26, 2005 10:20 AM CDT

Mitchell continues to eat like a champ and is keeping it down! Things seem to be coming together for Mitchell in the eating department.

Mitchell can now roll over by himself. He can get from his stomach to his back but needs a little help getting from his back to his tummy. But, he is working on it and I think he’ll be doing that on his own very soon. He is smiling more and yet as soon as I bring the camera out, he stops. He loves to make noises while I burp him. I’m not sure if he likes the “pounding” sound of his voice or if it is the vibration he feels in the back of his throat. Whatever it is, it cracks him up; he giggles and smiles. He also LOVES to bounce; I’m getting my workout during the day by bouncing him around the house. Again, this just cracks him up. If he is crying, a big bounce will go a long ways. In no time he’ll be giggling and smiling.

Mitchell’s Great Grandpa Jim and Sandy will be stopping by to meet him this weekend. They will be stopping for a night on their way up to the lake. We are excited to see them and I am very excited for them to meet Mitchell.

I will try to write an entry on Thursday night or Friday.

Have a nice week!
Paul, Katie and Mitchell

Friday, April 22, 2005 6:32 PM CDT

Mitchell had a good week. After his shots on Tuesday, he was a little crabby and tired, but nothing we couldn’t handle. The last few days he has been eating more and not spitting up. I asked Mitchell if he heard Dr. Kantak when he said, “As long as he is still spitting up a lot, there is no overnight stays.”

Yesterday Mitchell worked so hard at rolling over. He did it a couple of times with me positioning his hand in the right spot…he did the rest. A few more times and he’ll have it himself!

Great Grandma Cordes and Grandpa Cordes came to visit Mitchell today. He was pretty sleepy because he had been up all morning, but he did show them some a wake time. He even laughed and smiled. It was so nice to see them!

I talked to Mitchell’s plastic surgeon this week about his upcoming surgery and the recommendations made by the lung doctor. He thought that the recommendations were being overly cautious but agreed that we may need to be with Mitchell. He insured me that he has never had a problem with a baby recovering from this surgery. I told him that although Paul and I are very optimistic about how Mitchell will do in and after surgery; we agree with being overly cautious because of Mitchell’s trachea malaysia. Therefore, Mitchell will stay at least 2 nights in the Pediatric ICU after his surgery. It will ease our minds knowing that he will be monitored closely. Typically this surgery requires a 1 night stay in a regular pediatric room.

Have a nice weekend,
Paul, Katie and Mitchell

Tuesday, April 19, 2005 9:28 PM CDT

Mitchell’s appointment went well today. His pediatrician was very pleased to hear how well Mitchell is doing. He was pleasantly surprised at how well Mitchell is doing developmentally. He said that he seems to be doing everything a 4-month old should. He also said that I can stop waking him up during the night to eat. We will see how Mitchell does with waking himself up. We are going to let him go six hours at night. This is great for all of us!

The next time Mitchell goes in will be for his pre-operation check-up. This will be in about a month. It seems so far away and yet I know that it will be here in no time.

Have a nice night,
Paul, Katie and Mitchell

Monday, April 18, 2005 10:20 PM CDT

Mitchell saw Dr. Kantak, the pulmologist today. We talked about his most recent x-ray, trachea, his cleft surgery and traveling this summer. The x-ray showed that he has not aspirated anything. The doctor was pleased to see that Mitchell is getting bigger. As far as his trachea, it is just a waiting game. All we can do is wait until he gets stronger and hope that his trachea does the same. He is sounding better, but still is coughing when he gets upset. Dr. Kantak said that he should be good to go for his 1st cleft surgery. He recommends that Mitchell stay in the hospital at least 2 nights in the ICU under close supervision. (Usually it is only a 1-night stay) This is to make sure that Mitchell does okay breathing on his own after anesthesia. Paul and I had already suggested to the plastic surgeon that Mitchell stay 2 nights. He thought that it was a good idea. Traveling with Mitchell: the doctor recommends that we continue to stay in Moorhead until Mitchell gets stronger. With Mitchell still spitting up once a day and a good amount, he is concerned that Mitchell could aspirate. However, he did say that we could travel with him for daytime visits…just no overnighters. Dr. Kantak said to wait a couple months to see how the spitting and coughing is. We will have a follow-up visit in July.

Mitchell also played with his teachers today. The speech pathologist came out to see how Mitchell is talking. She was very impressed with how he is progressing. The best part is that Mitchell started to wave goodbye today. I know, sounds too early for that, but he really did. The 2 teachers both said goodbye to him and waved, he stuck his little arm out and opened and shut his pinky and ring finger. We talked a little more and they did it again, and so did he! It was very cute! We’ll have to see if we can get him to do it again.

Mitchell will see his pediatrician tomorrow for his 4-month check up. We’ll let you know how it goes.

Take Care,
Paul, Katie and Mitchell

Saturday, April 16, 2005 4:56 PM CDT

Today I am 4 months old! Can you even believe it? Seems just like yesterday I was bunched all up floating around in my mom’s tummy. I guess it isn’t so bad out here, for a while there I was beginning to wonder why I even came out. But, since Mom and Dad have brought me home, I really kind of like it out in the “real world”.

4 months old…there are a lot of things that have changed in 4 months. Of course the 1st is being here at home. Hum, what else. Well, Mom and Dad can set me down now without me crying. (just for a little bit though) I like to sing and dance now. And, instead of liking to be rocked, I’d rather walk around with somebody to look at all of the sights. I can kick and almost roll over! I am trying so hard to reach for things even though sometimes my arms don’t do what I tell them to. I can smile and laugh. And best of all…I am much healthier; I can breathe on my own, I rarely turn purple, I can eat enough to gain weight! Oh, I almost forgot; I LIKE MY BATH and I can go for walks. I’m sure I’m missing a few things; I really have grown a lot in 4 months!

Mom says this is just the beginning. She started reading the journal to me. Sometimes she has a tough time reading it because she is so thankful for how these 4 months have turned out. I also like hearing all of your messages to me. Dad says I’m one special Dude to have that many people care about me!

Lets celebrate 4 months,
Mitchell, Mom and Dad

Thursday, April 14, 2005 9:51 PM CDT

What a difference a week and a different formula makes. Since we have changed Mitchell over to straight formula, life has been easier for all of us. Mitchell isn’t as fussy, he eats more, is gaining weight and most of all enjoys eating again. It is nice to have our “old” Mitchell back! I’ve never heard of a baby preferring formula to breast milk…but I guess Mitchell isn’t just any baby. He got weighed today and he now weighs 12 pounds 1 ounce! This is 6 ounces since Friday. I have a feeling our little Mitchell may end up a little rounder in no time!

Mitchell had a good time playing with Jennifer today (his teacher). He is really starting to like sucking on not only his fists but also his fingers individually. This is going to make post-surgery interesting being he is going to be in arm braces to keep him from messing with his lips and nose. He is also showing signs of the beginning stages of reaching. We are guessing that within the next couple of weeks he will really start reaching for things. It is so nice to see that Mitchell is moving along nicely developmentally.

Next week is a big one for Mitchell. He sees the lung doctor on Monday for a check-up and goes to his pediatrician on Tuesday for his 4-month shots. Jennifer will come out along with the speech pathologist on Monday. I’m excited for her to hear how vocal Mitchell has gotten. (She only comes once a month)

Take care,
Paul, Katie and Mitchell

Monday, April 11, 2005 9:08 PM CDT

Mitchell had a great day today. He seemed to be pretty happy all day. He had a good day playing with his teacher.

Well, we have some good news and bad news. First, let me explain…lately Mitchell has been really fussy during some of his feedings. We were thinking he really needed to burp and so we were trying everything we could to get him to burp. Well, today I think we figured out why he was so fussy and mad. (That is the good news) The bad news; Mitchell hurt my feelings for the 1st time today (okay, I don’t feel too bad). I decided to look at the last couple of days of feedings to see when he was being fussy. Mitchell seemed to be taking only an ounce to two ounces of fortified breast milk and yet taking up to three or more of the straight formula. I did a little experiment tonight at Mitchell’s 7:00 feeding. He started out with breast milk, Mitchell got really fussy and wiggly. Then I switched to the formula bottle…happy as a clam! Mitchell has decided that he no longer wants or likes the breast milk. This actually is probably good. As long as he takes three or more ounces of formula, this means I can sleep longer and he will make his minimum.
Meaning that he probably will be starting to gain as he should and hopefully feedings wont be as stressful for all of us.

Our little guy is growing up,
Paul, Katie and Mitchell

Sunday, April 10, 2005 8:32 PM CDT

Family and friends surrounded Mitchell, Katie and me this weekend for Mitchell’s Baptism. My cousin Andy, his wife Missy, my sister Katie and her boyfriend Jeff spent Saturday with us and it was nice to visit with all of them. Andy and Missy had to leave their two girls back home with Grandma and Grandpa because they were coming down with colds. Andy, Jeff and I watched movies and the Master’s and the women fought over who got to hold Mitchell. Katie and Jeff came over from my parent’s cabin and it got me a little lonesome for spending time there. We can’t wait to be able to visit everyone from Nevis. With the great weather we’re having up here I’m coming down with some cabin fever. Baseball has been a great stress reliever for me, though, and it’s a lot of fun coaching the kids. The Moorhead High Head Baseball Coach, Jim Hurley, has spent the last few days in the hospital and we all miss him out on the field. We pray that he makes a quick and healthy recovery so he can enjoy sounds of spring with us. It makes for a little longer day for Katie, but with great weather they’ve been able to get out of the house as well.

Katie’s parents, grandparents, and aunt along with my parents were all able to make the long trips to enjoy today’s service. Our in town friends; the Martin’s, Martin’s and Stenehjem’s also celebrated the Baptism and joined us for some food and fun at our house afterwards. Mitchell’s buddies Max (7 ½ months) and Janie (2 months) came along with their parents to visit. It is fun to see how much Mitchell has changed from where he was two months ago (Janie’s age) when he laid around all the time. We also look forward to the development we hope to see from Mitchell by July when he is as old as Max is now. Mitchell had tons of fun playing with everyone and especially had fun lying on the floor looking at Max as Max grabbed Mitchell’s feet. He has grown so much, as you all know. He continues to get stronger each day and is becoming more and more content. The great days definitely out number the difficult.

Welcome to God Mitchell,
Mom and Dad

Thursday, April 7, 2005 9:30 PM CDT

Mitchell was too sleepy to play with his teacher today. Hopefully next week he will feel more like playing.

What a beautiful day it was! Mitchell and I took full advantage of the beautiful weather. I took Mitchell on his 1st stroller ride. Actually, we ended up taking a couple of walks this afternoon. Mitchell really liked being outside; he slept most of the time.

I talked to the audiologist again about getting Mitchell’s hearing tested. He was disappointed to hear that he would be unable to do it during Mitchell’s surgery in May.
We decided that we are going to try and get Mitchell’s hearing tested by bringing him into the clinic and getting him to sleep there. The audiologist said that usually they try to use chloral hydrate to sedate the babies. In the NICU Mitchell had this and was pretty apnic after. We would prefer to try and do it while he is sleeping on his own, if that doesn’t work, I guess we’ll have to use the chloral hydrate. This will not be done until after Mitchell’s 1st surgery. This is because we need to have the tubes put in to drain the fluid from his ears in order to get an accurate result.

Tomorrow Mitchell gets weighed…I’ll try to get a journal entry written so you know how much the big guy weighs!

Good Night,
Katie, Paul and Mitchell

Tuesday, April 5, 2005 8:48 PM CDT

Mitchell seems to be doing better on his new formula. He is even getting 1 bottle of straight formula mixture a day. We are easing him into taking just formula and no breast milk. So far he has done well with it. He has only vomited a large amount once since he has been on this hypoallergenic formula (1 week). He also doesn’t seem to be as congested and his breathing isn’t as labored.

Mitchell’s teachers didn’t come out yesterday. I called and told them he wouldn’t be in the mood to play…he was having a rough morning. They will come out on Thursday to play.

We will probably be writing every couple days now. There really isn’t much to write on a day-to-day basis. We see this as being good news; for a while Mitchell was making our lives a little too exciting! We are pleased at how well he is doing.

Thanks for the continued support,
Paul, Katie and Mitchell

Sunday, April 3, 2005 10:18 PM CDT

Mitchell had a good weekend. The nurse came out to weigh Mitchell on Friday and he weighs 11 ½ pounds! He is back gaining like he should.

Mitchell had a great time with Grandpa and Grandma this weekend. It was nice to get a little extra sleep and get some help cleaning for his baptism this coming weekend. Paul and I also got a chance to have our first date since Mitchell came home. It was just a quick outing to a local restaurant for a little dinner, but it was so nice to get time for just the 2 of us.

Hope you had a nice weekend,
Paul, Katie and Mitchell

Thursday, March 31, 2005 8:42 PM CST

Mitchell had a good time with his teachers today. He really impressed them with his tummy time. Lately we have been working on keeping his head midline, reaching for objects and head control. I am pleased with how Mitchell is developing so far. It is exciting to see how well he is doing.

Grandma and Grandpa Miller are coming for the weekend to help us get ready for Mitchell’s baptism (and to see Mitchell). Paul and I are hoping to have a dinner date. It will depend on how Mitchell is feeling and his eating.

Mitchell gets weighed tomorrow. He was 11 pounds last Monday. He is now on a hypoallergenic formula and seems to be doing okay on it. Now the question is if he is gaining weight on it.

Have a nice day,
Paul, Katie and Mitchell

Wednesday, March 30, 2005 3:12 AM CST

I guess we are a little behind with our postings. As you can see, it is quite early in the morning. Some nights we just don’t get to writing an entry and I guess I have to sit up with Mitchell for at least 20 minutes after he eats anyway, so I might as well get the entry written during this time. (Not much on TV at 3 AM)

Mitchell has been doing about the same. Though Monday he was very happy all day, he was a little more generous with his smiles. Well, at least for mom he was…his teachers still had a tough time getting him to smile.

The nurse will come out to weigh Mitchell on Friday. She was suppose to come out Tuesday, but ended up being ill. We are still working on finding a formula that makes Mitchell happier. I'm sure the doctor by this time thinks I’m pretty crazy…oh well. He still believes that there is nothing we can do about all of the mucus he has and his spitting up. I told him that I guess I’d like to try everything I can before I come to that conclusion myself. And although I’m beginning to think he may be right, at least I’ll know that we’ve tried everything.

Mitchell will go in for an x-ray today. This is so the pulmonologist can take a look at his lungs to make sure everything is still as it should be. After Mitchell’s episode in his car seat a couple weeks ago, I’m not a big fan of bringing him out by myself. But, it’ll be nice to get out of the house being it has been so warm lately.

We have set up Mitchell’s baptism. It will be on April 10th at 9:00 at Trinity Lutheran Church in Moorhead. Anyone is welcome to come to the service.

Write again soon,
Paul, Katie and Mitchell

Sunday, March 27, 2005 7:58 PM CST

Happy Easter! Mom, Dad and I had such a nice weekend. Today they brought me to church! It was nice to get out of the house. Being it was our 1st outing, I thought I would be good and sleep most of the time. It was hard with all of the loud music and all of the voices I could hear. But, I made it the entire service without crying. The Pastors were excited to see me. We sat by some of Mom and Dad’s friends from school.

Max, you were right, the Easter Bunny came to my house too! I got a baseball basket and some toys and a couple of sleepers. The Easter Bunny must know that I’m growing out of my clothes.

My teachers come tomorrow to play with me. I really like when they come. I hope that I’m in a good mood and not sleepy.

We hope you had a happy Easter,
Mitchell, Mom and Dad

Friday, March 25, 2005 9:41 PM CST

Mitchell, Paul and I are enjoying a relaxing weekend, just the 3 of us. I think we are planning on trying to go to church this weekend. This will be Mitchell’s first outing besides going to appointments. It should be interesting…we’ll have to have an aisle seat so we can get him out if he decides to be crabby.

Mitchell is back eating like a trooper. He is still spitting up with the breast milk and formula mix. I’m not really sure if we are just going to accept this or try to find something else that works better. It can’t be easy on him switching formulas all the time. I’ve been on the Internet a lot lately talking to other parents with cleft babies. There are some pretty good support groups. It seems like this is a problem many of them have had. One mom said that her son had a lot of mucus until he was about 3-4 months old and then it just got better. I guess we’ll see how this week goes.

Happy Easter,
Paul, Katie and Mitchell

Wednesday, March 23, 2005 9:07 PM CST

Mitchell had a decent day today. He is having a tough time with the soy formula and so Paul and I decided to switch back to the regular formula with breast milk. It was clear to us that he was struggling more than he was with the regular Enfamil with Iron. He spit up/vomited twice today on the soy milk…this was enough for us to switch him. He also hasn’t been eating as much. I am watching him closely so he doesn’t get dehydrated. We are hoping that he decides to eat a little more tonight so that he can get back on his eating schedule. He is usually pretty happy until it is time to eat. I think that he gets pretty frustrated with the mucus and maybe it is irritating his nose as well. I wish he could just take enough to stay on straight breast milk being he did pretty well on that. But, my milk supply is diminishing and he will have to be switched to straight formula in a month or so. I’d like to get this figured out before that happens.

His teachers came out today to work with him. Mitchell was pretty tired so they didn’t get to work much with him. However, he seems to be progressing well. We are going to start sign language with him. This is something I looked into while I was pregnant. I had babysat a little girl that used sign language and it was so slick. It was an easy way to communicate what she needed until she could talk. We are certain Mitchell can hear, but studies show that signing promotes language. I am excited to start even though he probably wont really get “into” it for a few more months. We will be working on basic signs; mom, dad, grandpa, grandma, eat, stop/done, sleep, play, up…things like that. His teachers were excited to hear that we were considering this and they will help us learn the basic signs. Grandpas and Grandmas, we’ll have to send you info so you can study up!

Wish us luck tonight,
Paul, Katie and Mitchell

Tuesday, March 22, 2005 7:34 PM CST

Mitchell had a pretty happy day today. However, he started his soy formula this afternoon and was pretty fussy. It was hard to tell if it was the milk or gas…I guess we’ll see what kind of night it is.

Sarah, your entry about Grandma Marj brought tears to my eyes. Mitchell is so lucky to have such wonderful Grandparents and Great Grandparents that care and love him so much. And though Paul and I would love to have all of our Grandparents able to meet and see him, we know that he definitely has his own group of Guardian Angels up above watching over him.

Grandparents and Grandchildren,
Together they create a chain of love
Linking the past,
With the future.
The chain may lengthen,
But it will never part.
-Author Unknown

We thank God for Grandparents,
Paul, Katie and Mitchell

Monday, March 21, 2005 7:05 PM CST

Well, the nurse came out to weigh Mitchell today and we found out that he isn’t gaining enough weight on strictly breast milk. Mitchell weighs exactly 11 pounds, only 1 ounce more than 5 days ago. Dr. Welle said that we should start fortifying the breast milk again, but we will be able to do this with soy formula to see how that works. He said that we could stay on breast milk alone only if he is able to take 25 ounces in a day. This is just too hard for Mitchell to do and we are unable to push him too hard in fear that he could aspirate. Currently, Mitchell is able to take in about 17-20 ounces a day.

On the up side…Mitchell and I worked very hard today on getting a picture of him smiling. After about 20 shots, we finally got one! (Check it out) This left Mitchell and myself exhausted.

Paul started baseball today. This means I will be home with Mitchell until about 6:00 every night. I am going to have to remember to get those naps in when Mitchell naps!

Take Care,
Paul, Katie and Mitchell

Sunday, March 20, 2005 4:31 PM CST

I had a fun weekend visiting with my Nana and PapaBear. They showed up Thursday night due to the big snow that was predicted for Thursday night in the Twin Cities. They just missed a foot plus of snow in Hastings by coming up early. This meant I had extra time to get some extra attention. I made sure Nana was busy by giving her lots of jobs to do to keep me occupied and happy. It was fun playing with her and I even did some posing for her to take lots of pictures. She sure does like to take lots of pictures to show me off to her friends and family. I also think she’ll save some of those shots to use as blackmail when I get older. I don’t care though; it’s always fun to get so much attention. In fact, I spent Sunday sleeping all day so I can catch up on some rest. Papa and Dad spent the weekend watching basketball. I don’t think my Dad knows anything about the teams who are in the tournament, but he sure does act like an expert. I can’t believe they can spend eight hours a day watching that silly sport. Not only that, they would surf over to watch golf to see how Tiger was doing and hockey to see if the Gophers could pull out a win or two. After all those sporting events, I don’t think Dad will be able to get himself off the couch to start baseball on Monday.

I’m feeling great. I don’t have that congestion problem once Mom stopped adding formula to the breast milk. In fact, I like to eat it straight much better. I seem to take more each feeding and it doesn’t take me quite as long to finish my bottle. Well I’m too tired to continue writing, besides I’ll have to bug Dad for awhile. Maybe I’ll cry so he’ll have to get off the couch to pick me up.

Back to sleep,
Mitchell

Thursday, March 17, 2005 7:59 PM CST

Yesterday was Mitchell’s 3 month birthday! It is hard to believe that he is 3 months old. Some days it feels like he is a newborn and yet some feel like he has been a part of our lives forever. Those first few weeks were so tough for Paul and I, now they seem like they happened years ago. Looking at Mitchell you would never guess that he has had such a tough 3 months of life. He is doing so well at home, Paul and I count our blessings!

The nurse came out to weigh Mitchell yesterday. He weighed 10.15, so close to 11 pounds! He is gaining a little over a half an ounce a day. Mitchell is doing well on just breast milk. He doesn’t seem so congested and hasn’t vomited since the switch. (knock on wood!)

Our friends Chris and Lisa are making supper for us again tonight. We are so lucky to have such great friends! Nana Trudy and PapaBear are coming up tonight as well.

Happy St. Patrick’s Day,
Paul, Katie and Mitchell

Tuesday, March 15, 2005 9:11 PM CST

Today was a big day for us…Mitchell made it through an ENTIRE bath without crying! This means undressing, bath time, and re-dressing! We have been working towards this for sometime now. He is getting to be such a big boy.

Mitchell had a great time playing with his teachers today. We tried so hard to get him to crack a smile, but Mitchell doesn’t show smiles to just anyone. He is pretty stingy with his smiles, but we did manage to get a smirk. His teachers think that his muscle tone is starting to relax a bit. Mitchell is bending his legs and arms more, he isn’t so stick straight. I am so thankful that I can stay home with him. I love watching him develop right before my eyes!

Today I played a new CD he got from his Godparents Andy and Missy. Mitchell absolutely LOVED it. I like to play music while I change his diaper; this is the 1st time I’d played his new CD. He talked (okay sang) like there was no tomorrow, was kicking his feet and was just happy as a clam. Thanks Andy and Missy!

I worked on setting up the other appointments Mitchell needs before he goes into his 1st cleft surgery. We are working on getting an ENT to put in the tubes at the same time; they should call back this week. I also talked to Dr. Welle (pediatrician) about setting up a 4-month check-up and a pre-op. physical. Dr. Welle was also interested to hear how Mitchell is doing since his episode last Monday. We also talked about his congestion again and the idea of allergies. He still thinks that it is due to his cleft palate being irritated by milk but said that just to make sure Mitchell can go on plain breast milk for 5 days. (Instead of fortifying w/formula) Hopefully he doesn’t loose too much weight by doing this little experiment. I am thankful that we picked a pediatrician that is so patient with us and willing to spend the time in the office or on the phone with us.

Write more tomorrow,
Paul, Katie and Mitchell

Monday, March 14, 2005 10:00 PM CST

Mitchell had a good day today. His teachers came to play with him and were impressed with the improvement over the week. They said, “What a good student you are, you worked on your homework!” They are going to come again tomorrow to play. Mitchell’s nurse will come out on Wednesday to weigh him…he should weigh at least 11 pounds by then!

Dr. Lamb’s office called today with Mitchell’s 1st cleft surgery date. He will have his lip and nose repair on Monday, May 23rd. It’s so nice that he will have another couple of months at home before he has to go back into the hospital. The trick is to have that surgery as late as you can but to make sure we have enough time to rest before he has to have the next. They want it all done by the time Mitchell is 9 months old. This would be September, but they count it as October because he was almost a month early. It is nice to have a timeline finally set. I just can’t wait to get that palate repaired. I think that it will help him so much with his feedings.

Until tomorrow,
Paul, Katie and Mitchell

Sunday, March 13, 2005 9:04 PM CST

Mitchell had a great weekend. He was such a good little boy for all of his company! Friday he got to play with Chris and Lisa. On Saturday Amanda came up to play with Mitchell. He was so alert all weekend, and loved to play with everyone! Today he slept most of the day because he has a tough time doing that when company is here. He gets so social that he doesn’t want to miss anything by sleeping.

Mitchell seems to feel better. I think he is a little less congested, hopefully we are on our way to figuring out what he is allergic to. He is still spitting up almost once daily, but it seems to be not as much.

Tomorrow Mitchell’s teachers will come out to play with him. I’m excited for this because Mitchell seems to be developing right in front of our eyes. I hope he shows them all of his new tricks!

Have a nice day,
Paul, Katie and Mitchell

Friday, March 11, 2005 6:29 PM CST

It’s been a fun couple of days being home for spring break. It’s starting to warm up some and I’m looking forward to baseball starting on the 21st, but it’s been a lot of fun just laying around the house with Mitchell. Katie and I purchased an air purifier and hope this helps clear up Mitchell’s mucus problem. So far so good. Mitchell had a great day where he spent most of the time awake and in good spirits. It was fun being able to play with him today because that is what I do best. He does an outstanding job of tracking and is responding to voices more consistently. The MHS science department bought Katie and I a baby carrier so we can strap him to our chest and walk around with the little guy. He loves traveling around the house looking at all the sights, and Katie and I love being able to use both hands to get some work done. What a great invention.

Chris and Lisa are making lasagna and are coming over for supper tonight. If Mitchell stays in his good mood hopefully we’ll be able to play some cards as well. Chris and Katie have no chance at pinochle tonight.

Have a good weekend,
Paul, Katie and Mitchell

Thursday, March 10, 2005 10:17 PM CST

Mitchell slept pretty much all day today. He was pretty congested and just didn’t feel well. We are pretty convinced that he has an allergy to something, now we just have to figure out what it is. We decided to start with our room and if that doesn’t work we will check out the formula. We bought an air purifier for the room and have spent the day cleaning upstairs. It just seems that it would be such a coincidence that Mitchell just became allergic to his formula when he got home. We will give the air purifier a try for a couple of days, or a week and see if we see any improvements.

Mitchell is really starting to move around when he is awake. It is really fun to see. It’s almost like he heard everything we talked about at his meeting. He is bringing his hands together more, bringing both hands up to his mouth and seems to be starting to turn to sounds. It is so fun to watch him develop and even more exciting because I think he is surpassing what everyone thought he could do. But, leave it up to Mitchell to surprise people!

Have a nice day,
Paul, Katie, and Mitchell

Wednesday, March 9, 2005 7:51 PM CST

Today we met with the plastic surgeon. He reviewed the surgery timeline with us and answered some of the questions we had. Since Mitchell was 3 ½ weeks early, Dr Lamb doesn’t mind us putting off his lip/nose surgery a little bit. Basically that surgery is mainly for cosmetic purposes so it is really up to us as to how soon we have it done. He wants us to have it done anywhere from 3-6 months. We are going to give Mitchell another month before we put him back in the hospital. This way we can maybe figure out why he is so congested and also his lungs will be a little stronger. Dr Lamb said that Mitchell should not have so much mucus and that he thought it could be due to allergies. We are 1st going to check and see if maybe he has developed an allergy to the formula that we are fortifying the breast milk with. If that doesn’t work, we will look at maybe something in the house.

We talked about the possibility of having the hearing test done at the time of the surgery. Dr. Lamb frowned upon this but agreed to have the ear tubes put in during the lip repair. We will have to figure something else out with the hearing test.

Paul has off Thursday and Friday so I am going to get a massage tomorrow! It’ll be nice to get out of the house and relax. Paul is looking forward to having a couple days off and spending time with Mitchell. Maybe we’ll even get some new pictures to put on!

Have a nice day,
Paul, Katie and Mitchell

Tuesday, March 8, 2005 10:26 PM CST

Mitchell slept a lot of the day today. Mitchell’s color seemed to be better. Tonight we had the science department over so they could meet Mitchell. I was wondering how he was going to do after his big day yesterday, but he was pretty good. He was a little fussy at times, but Mr. Social came out too. This was the 1st time he had acted like himself since Thursday or Friday last week. It was nice to see. Hopefully he will continue to sleep a little extra so he can fight off what ever is bothering him.

Tomorrow we meet with the plastic surgeon. We will be talking about a timeline for Mitchell’s cleft surgeries. We’ll let you know what he says.

Thanks for the prayers,
Paul, Katie and Mitchell

Monday, March 7, 2005 10:18 PM CST

This weekend Mitchell got to play with Grandpa and Grandma. He also got to meet a few new friends. However, Mitchell just hasn’t been himself lately and really didn’t feel like playing. Paul and I have noticed that he is coughing a little more, is congested a little more, is a little dusky in color and has a little harder time breathing. I thought I’d wait and see how he was this morning, as he had his friends from Early Intervention coming out to play with him. Mitchell has really enjoyed the time he has spent with them, but today he just didn’t feel like playing and wasn’t acting like himself. I decided to take him in to see the doctor to check and see what his oxygen saturation was. His doctor was full so we had to go to the walk-in clinic, which is actually in the same building. Mitchell’s saturation was good but the doctor could also see the duskiness so she ordered an x-ray. The doctor said that it looked good but that they needed to compare it to his last one and they would call. The nurse called when we got home and said that we needed to come back and get a 2nd x-ray because the 1st one wasn’t clear enough. While we were waiting to see the doctor about the 2nd x-ray, Mitchell had an apnic spell. He was sitting in his car seat and decided just to stop breathing for a while. I called for a nurse to help me with him and by the time we got Mitchell to the bed, Mitchell had started breathing again. However, he was extremely dusky/purple and not responding well. He pulled out of it and turned pale and then eventually got back to normal color. Our pediatrician had us wait for 45 minutes before he sent us home. Mitchell took a short nap and was back to normal when we left for home. I fed Mitchell when we got home and then he was all smiles and coos. (I guess he thought it was pretty funny) We aren’t sure why he had the apnic spell, I’m glad we were at the clinic though. Mitchell did not need oxygen at the clinic; he was able to recover on his own. The doctor thinks that maybe Mitchell is coming down with something. We will be watching him closely for a while.

Thanks
Paul, Katie and Mitchell

Friday, March 4, 2005 5:13 PM CST

Mitchell had a great day today. He is eating much better and not spitting up nearly as much. He got weighed today and he now weighs 10 pounds 8 ounces! So, Mitchell is back on track, gaining about an ounce a day. June (the nurse) will come out next Friday to weigh him again. I was able to see where Mitchell falls on the chart for weight, height and head circumference. He is in about the 50th percentile for both weight and head circ., and is above 50 for height! It is comforting to know that he is within average range when it comes to growing.

This weekend Mitchell will get to play with Grandpa and Grandma. He is very excited to see them as is mom and dad! (We get a little extra sleep) Mitchell just LOVES being around people…we call him our little social butterfly! He will also get to watch hockey as the Spuds try to take a state championship this weekend. GO SPUDS

Have a nice weekend!
Katie, Paul and Mitchell

Thursday, March 3, 2005 6:37 PM CST

Mitchell has been pretty content today. We have asked Paul’s cousin Andy Lindow and his wife Missy to be Mitchell’s Godparents and he got to meet them today along with there two daughters Megan and Molly. They grew up and still live in Nevis, Minnesota where Paul has lots of relatives we both love spending time with. With such a hectic winter we haven’t been able to travel to Nevis to see everyone though. We sure do love it when they are able to make to Moorhead to spend time with us so we can show off our little guy. Unfortunately I forgot to take pictures, next time. We are still working on a day for Mitchell’s baptism. We’re thinking of mid-April and when we know more we’ll let you know.

We had our 1st IFSP meeting for Mitchell today. (Individual Family Service Plan) It is basically like an IEP meeting, but for babies. Mitchell had a bunch of professionals around the dining room table talking about him. You guessed it, he was very good and loved looking at all of the people. We talked about Mitchell’s strengths and weaknesses. Some of his strengths that they found were his ability to feed, socialize, ability to be calmed and letting us know what he wants. Mitchell needs to work on different movements. His legs and arms are a little stiff. However, overall it seemed like his teachers were impressed with how he is doing considering how much he has already gone through medically.

Nurse June comes out to weigh Mitchell tomorrow. I think that he has been gaining weight. He seems to be eating better and spitting up a little less.

Love,
Katie, Paul and Mitchell

Wednesday, March 2, 2005 6:59 PM CST

Mitchell had a very good day today. He didn’t seem as congested today and therefore has not vomited at all. We went to the Audiologist and ENT today but did not find out much.
We did find out that the pressures in Mitchell’s ears are abnormal. Though this could be a sign of a hearing deficit, the Audiologist said that this could be due to the fluid in his middle ear and also because of the cleft palate. We also got more of an explanation of what tests they have done on Mitchell for his hearing. Mitchell was given a hearing test that relies on pressure, he failed this test but that does not mean that he cannot hear. The Audiologist wants to give Mitchell a test that tests brain wave activity. This test is pretty accurate in determining what he can or cannot hear. The problem is, he has to be sedated for this test, which is something that he does not need right now. We are going to try and get this test done when he is sedated for his 1st cleft repair. We really hope that we can work something out to make this work. Our little Mitchell has been sedated a few too many times.

Mitchell has had a pretty bad diaper rash, but did I find a miracle cure! I read in a magazine that a product called Triple Paste is suppose to work wonders. It is a little more expensive, but I thought if it worked it would be worth it. Well, I started using it yesterday afternoon and his rash is getting better as we write! In fact, Mitchell has not cried once during a diaper change today!

Mitchell has been a happy little guy today. I think the combo of curing the diaper rash and not being so congested has made him happy as a clam!

Feeling good,
Katie, Paul and Mitchell

Tuesday, March 1, 2005 7:09 PM CST

Today weigh in didn’t go so well. Mitchell has only gained 2 ounces since the nurse came out last week. She is going to come out again on Friday to see how he is doing. The vomiting/spitting has gotten to be at least once a day if not more. This is really setting him back as far as his weight goes. Other than that, Mitchell is doing well. We will write more tomorrow after we meet with the audiologist and ENT.

Thank you,
Katie, Paul and Mitchell

Monday, February 28, 2005 7:30 PM CST

Mitchell and I had a pretty eventful day today. He decided to take a nap after his morning feeding at 6. This is a great thing, usually he is up for the day after this feeding. So, Mitchell and I took a nice nap in the recliner. He was awake for most of the day after that. My friend Diane came to visit us after school. She enjoyed rocking him and he fell right to sleep in her arms. It’s always nice to have company come to hold Mitchell. He is getting to be a big boy and my arms get tired during the day, as he demands to be held most of the time when he is awake.

He is still spitting up quite a bit. Yesterday he spit up 3 times, this is the most he has spit up in a day. (Since his stomach surgery) Last night he gave us a little scare as he had a tough time clearing his airway. However, with a little suctioning help he got it clear and is back to normal. Today he has just spit up once so far. The nurse comes out to weigh him tomorrow and we are hoping that with all of his spitting, that he is still gaining weight. We are pretty sure that the spit up is due to all of the extra mucus in his mouth because of the cleft palate. It sure will be nice to get that fixed, though we have to wait until he is 6 months old. Next week we will get more of a timeline on when his cleft surgeries will be.

There really isn’t much new here, which we see as being a good thing. Wednesday will be a big day for us, as we will meet with the ENT and Audiologist about Mitchell’s hearing. We believe that he is hearing impaired, the question is how severe is it. We pray that it is something that would be able to be amplified with hearing aids or some other type of technology. Of course we still hope that maybe he is just being stubborn and blocking out the everyday sounds around the house. Hopefully the audiologist will be able to answer these questions.

Have a nice evening,
Katie, Paul and Mitchell

Sunday, February 27, 2005 12:36 AM CST

Spring training has started and I'm getting in shape for the season.

Go Twins and Spuds,
Mitchell, Mom and Dad

Friday, February 25, 2005 5:33 PM CST

Mitchell’s doctor appointment went well today. He weighed in at 10.6! He is gaining almost an ounce a day. However, they are still watching his weight closely and so we still need to document every time he eats. We are also trying and get him to eat a couple more ounces a day. I’m not really sure how we are going to do that, but we’ll figure something out. Mitchell’s next doctor appointment with Dr. Welle will be in about a month for his pre-op. check.

Other than his doctor appointment, Mitchell had a pretty lazy day. Unfortunately this probably means he is going to have an exciting night!

Have a good weekend,
Katie, Paul and Mitchell

Thursday, February 24, 2005 11:48 AM CST

Mitchell was wide-awake yesterday for his teachers. He did really well with tracking objects and talking to the speech pathologist. Even with my Early Childhood degree, it still amazes me how much these people know about babies and their development!

We are still waiting for more testing to be done to see if Mitchell can hear. The teachers that were out yesterday thought that they saw some responses that would indicate that he can hear something. I guess only time will tell. We have an appointment with the audiologist and ENT on Wednesday.

Mitchell is smiling more and more everyday. His smiles are beginning to be more of a response rather than just random. This is so fun to see! He had his 1st real response smile this weekend with Grandma and Aunt Jamie to witness! Mitchell was sitting in his bouncy chair and I walked over to him to talk to him and he looked up at me with the biggest grin. It was so fun to see, it brought tears to my eyes.

Tomorrow we go and see the pediatrician again. I believe it is just a check-up, we will talk about his vomiting and once again he’ll get weighed.

Keep Smiling,
Katie, Paul and Mitchell

Tuesday, February 22, 2005 8:00 PM CST

Mitchell had a great weekend with Uncle Beckett, Aunt Jamie and Grandma. By Monday, they all became pros at bouncing Mitchell until he calmed. This was wonderful because Paul and I took advantage of it by getting some extra naps in and sleeping late!

Mitchell had a busy day today. The nurse came out to weigh Mitchell and he weighed in at 10.3! This means that he is gaining about an ounce a day, which is right on track. Mitchell is still vomiting about every other day, but it is nice to know that he is still gaining weight.

Mitchell also got to play with his Teacher and Occupational Therapist from Early Intervention today. Mitchell was pretty tired, but he did a nice job tracking objects for them and even cracked a smile. They will come again tomorrow in hopes that Mitchell is a little more awake. I thought it was fun watching them work with Mitchell. I can tell that both of us will enjoy having them come out to the house to work with him.

Progressing,
Katie, Paul and Mitchell

Saturday, February 19, 2005 10:00 AM CST

Yesterday Mitchell met his Uncle Beckett and Aunt Jamie for the first time! He enjoyed seeing the new faces and of course, being rocked by them. However, it didn’t take long for Mitchell to show them all of his different moods. They got a kick out of his feistiness.

Mitchell is doing okay with his feedings. He isn’t taking what he should, but is getting there. He vomited again yesterday, but it was almost all mucus. The nurse came out to weigh Mitchell; he is up to 10 pounds! This is a big mark for us, now once he turns 3 months old he can have his first cleft surgery. He will get weighed again on Tuesday; hopefully he continues to gain. I never thought the little guy would be weighed so much,
and never thought I’d be holding my breath each weighing in hopes that he has gained.

The weekend is going to be spent lounging around with Grandma, Uncle Beckett and Aunt Jamie. We will be celebrating Beckett and Jamie’s 1st wedding anniversary today with Grandma’s famous prime rib dinner. It is fun to try and time dinner just right so that Mitchell is content and we all can eat at the same time.

Have a nice weekend!
Katie, Paul and Mitchell

Thursday, February 17, 2005 6:01 PM CST

I can’t figure out what this guy does but he sure smells funny. I like hanging out with the little human though. He doesn’t do much but sit around but he sure is interesting to watch. I like to be in the same room with Mitchell and his crying doesn’t bug me very much anymore, but it sure sounds painful. I’d like to teach him how talk like me, but he does knows how to get Mom and Dad’s attention with his noises. I’m not a big fan of his monitor though. It sure is loud but I’m learning to tune it out.

It is nice to have Mom home all the time, but she doesn’t seem to have much time to play with me like before. I still like to jump up and steal a nap when she takes a break, but she doesn’t get very many breaks these days. That Mitchell sure does take a lot of attention away from me; even Dad has less time to play. I make sure to be at the door as soon as I hear Dad’s garage door open so I can get a little affection before he gets too busy bouncing Mitchell. I do look forward to the nights he spends time on the computer so I can sit on his lap for a while.

Mitchell did go to the pulmoligist (lung specialist) this afternoon to see how his lungs are working. I hope I can help him with lung strength because Mom and Dad have always been impressed with my lungs, especially when I want to go outside or have something to eat. Dr. Kantak told them that Mitchell seems to be progressing nicely and that both lungs sound equally as strong. The doctor wants to see a chest x-ray of his lungs in the middle of March to okay him for the first cleft surgery. Dr. Kantak will also need to see him a week after the surgery to monitor the progress.

I can’t wait until he’s strong enough to play with. I’ve got so many tricks to show Mitchell.

Meow,
Mercury

Wednesday, February 16, 2005 8:29 PM CST

Today Mitchell is 2 months old! It is hard to believe he is already that old, seems like he is only a couple of weeks old.

Mitchell had a pretty good night. He made it through the night without vomiting. However, he didn’t eat much. Mitchell only vomited once today and ate pretty well throughout the day. We went in for an ultrasound today and it showed that his Pyloric Stenosis is NOT back. This is a great Birthday gift for Mitchell (and us)! Now we just have to figure out what is causing the vomiting.

I talked to one of the nurses from the NICU today about Mitchell’s apnea monitor. When I told her about his vomiting, she said that her daughter would do that when she ate too fast. When feeding Mitchell, we help him get more in by squeezing the bottle a little while he sucks. He was unable to tolerate this when he was first born, but he had been tolerating it pretty well the last month. The problem is that Mitchell is unable to get enough milk to grow if you leave it up to his working at it alone. We also try to let him take the bottle as fast as he can because if we do it too slow, he’ll fall asleep. I will talk to the doctor tomorrow about possibly increasing his calories again. This would lower the amount that Mitchell would need to take in. Hopefully he would be able to reach his minimum on his own without us squeezing. I’m thinking that maybe that would stop the vomiting.

Tomorrow Mitchell sees the lung doctor. We are anxious to see what Dr. Kantak has to say about how Mitchell is developing. We will let you know what he has to say.

Thanks,
Katie, Paul and Mitchell

Tuesday, February 15, 2005 6:43 PM CST

Well an exciting day to say the least! Mitchell just hasn’t been himself since Sunday. I brought him in today to see Dr. Welle because the vomiting continues. He really is acting just like he did when he had Pyloric Stenosis. They say that usually it doesn’t come back after the surgery is done…but this is Mitchell we’re talking about. (So anything is possible) Dr. Welle set up an ultrasound for tomorrow to see if it is his stomach again. The ultrasound isn’t until 3:00, but he said to call if we have a night of vomiting and he’ll try to get him in somewhere. Today, we both have gone through a few outfits! I’m guessing it’ll be a long night as we have to watch him closely because if he does vomit, we have to make sure he is able to clear his airway and get it all out. Wish us luck tomorrow.

Trying to keep food down,
Katie, Paul and Mitchell

Monday, February 14, 2005 9:10 PM CST

Today was Mitchell and my first day home alone. He slept most of the morning, which gave me a chance to get a shower and a short nap in. The afternoon was a little more challenging. Mitchell had a pretty good spit up which reminded me of how he was when he had Pyloric Stenosis. Fortunately he managed to hit the blanket and his shirt and not the floor. He was sitting in his vibrating chair and I think he slouched down a little too much, cutting off his stomach. Other than that, the day went well. The nurse came out today and Mitchell weighed in at 9.14 pounds. Mitchell seems to be going through a growth spurt, which also may be causing him some pain that makes it hard for him to get comfortable. The pains of growing I guess.

Talk to you later,
Katie, Paul and Mitchell

Friday, February 11, 2005 7:59 PM CST

It was Mitchell’s first outing since he has been home. As you can see, he was looking pretty cool in his new shades from Great Aunt Jeanne! They are a little big, but he’ll grow into them.

Mitchell had his 2 month check up with his pediatrician. This is the first time we met Dr. Welle and both Paul and I really liked him. Mitchell was such a good little boy at the clinic. He had to spend the entire hour in nothing but his diaper. Mitchell hardly cried at all! The only time he fussed was when he got his shots and when the doctor took his diaper off. Paul and I were so proud of Mitchell!

Mitchell has continued to gain weight. Today Mitchell weighed in at 9 lbs 13 oz., however he was 9.8 on Wednesday. I’m not sure if he has just gained 5 oz. in 3 days or if one of the scales was off. Anyway, he is gaining and that is a good thing.

The doctor gave us a few stretches to do with Mitchell. One was for his hips and one for his feet. Other than that, the doctor said he looked good. Doctor Welle wants to follow Mitchell’s progress carefully so he will do another check-up in 2 weeks.

We will hold off writing a journal entry until Sunday or Monday. We will let you know how the weekend goes!

Have a nice weekend,
Paul, Katie and Mitchell

Thursday, February 10, 2005 7:09 PM CST

Paul and I are enjoying the week together with Mitchell. We are getting a system and schedule down for him. He does pretty well, though still cries a lot due to gas. We have his first doctor appointment tomorrow afternoon. Okay, not really his first, but first with his pediatrician. Hopefully his doctor will have some insight on what we can do to make him a little more comfortable.

Mercury is getting more brave everyday. Today she went over to Mitchell and started to smell him. I wish we had a camera, it looked like she was going to give him a kiss. If you know Mercury’s personality, you can guess I was watching her like a hawk!

The week has gone pretty fast. It has been nice having Paul home this week so we can figure Mitchell out together. I am surprised at how much sleep I have gotten this week. Last night was probably the worse night as far as fussing, but Mitchell and I just relaxed and fell asleep on the Lazyboy recliner. I’m hoping he gets back to his every four-hour schedule.

Till Tomorrow,
Paul, Katie and Mitchell

Wednesday, February 9, 2005 5:38 PM CST

Katie and I are starting to settle into a routine. Mitchell also has thrived in his new environment. He can still get pretty crabby at times, but we are starting to figure out some tricks to make the little guy feel better. The main source of Mitchell’s crabbiness is usually a build up of gasses in his stomach. Once that’s taken care of Mitchell is truly fun to hang out with. He’s learning to stay calm and he loves looking around when we take trips around the house. He also likes looking outside and enjoys all the natural light during the day and the darkness of night.

Mitchell had a few visitors today. The home nurse saw him this morning; she will stop by three more times to weigh him and evaluate his progress for the first couple weeks out of the hospital. Katie and I have been pretty worried that Mitchell might lose weight after arriving home so we were eager to learn his new weight. Ten pounds is the magic number he needs to undergo his first cleft surgery to repair the lip. Mitchell was discharged Saturday with a weight of 9 lbs. 4 oz. and today he weighs 9 lbs. 8 oz. This comes to a huge relief to the Cragg family and we look forward to Mitchell gaining eight more ounces to get to surgery weight. We anticipate lip surgery to be late March or early April.

This afternoon the early intervention teacher for infants also visited Mitchell. She will work with Mitchell weekly on development goals and will discuss strategies that Katie and I can use to help continue his development. It will be her job to monitor the progress and help us figure out Mitchell’s strengths and needs as he grows.

Nana is here to visit for a couple days. She traveled to Nevis yesterday and came to Moorhead this morning to play with the little guy. She is so impressed with how big he is, how healthy he looks and how well he feeds. They got to rock and hold each other while Katie went out to do some shopping for crafts to use to make a baby book and I went outside to finally take the Christmas lights off the house. Mitchell slept most of the time this morning until 2:00 pm; then he was very alert and visited with us. I guess he had lots to say to Nana.

Love,
Paul, Katie and Mitchell

Tuesday, February 8, 2005 5:13 PM CST

Boy am I glad to be home! I’ve been really sleepy and not as hungry as usual, but once I get use to being here I’ll change. I’m starting to get comfortable with mom and dad around all the time. I miss the nurses who took care of me, but nothing beats being with your mom and dad!

I really like to sit in my bouncy chair and swing that mom and dad have for me. It is so bright here; I really like to look outside. I never got to when I was in the NICU. Mom and Dad said that when I get bigger I get to play with the kitty that is walking around here. She looks at me kind of funny, but doesn’t want to get too close to me.

Mom and Dad tell me that my Nana Trudy is going to visit me this week, I’m excited to see her. They also said that I’m going to meet a new friend tomorrow. She is going to visit me every week to watch how I’m growing and to make sure I can do things other babies can do. Mom said it is going to be fun; I’ll get to play with her. I have to meet another doctor on Friday. I don’t mind doctors as long as I can come home with mom and dad after seeing him. I’m kind of excited to ride in my car seat again! It is going to be my first outing since coming home.

Thank you for helping Mom and Dad while I was in the hospital. They tell me everyday how lucky I am to have so many people that love me. I can’t believe how many people pray for us everyday! Thank you!

Glad to be home,
Mitchell, Mom and Dad

Monday, February 7, 2005 3:32 PM CST

Mitchell had a great night last night! This basically means he let us sleep! He woke up every four hours to eat. He did have an hour or two of fussiness, but we feel pretty rested, so we can’t complain. Mitchell is beginning to eat better, hopefully as he gets use to his surroundings his appetite will just get better and better.

Mitchell tends to be a little fussier during the daytime. I think that he gets pretty gassy and this is causing a little discomfort. So all you moms out there respond if you have any tricks for gassy/colicky babies. He gets a lot of air due to his cleft palate, we really try to burp him the best we can and usually we get quite a few burps. But, he still seems to be upset.

Visitors…you are welcome. Please try to call before coming over to make sure we are free. Mitchell will start going to appointments soon and we will be having a nurse and early intervention services come out to the house as well.

Please do not be offended if we ask you to wash your hands before holding Mitchell. Though he is home and seems healthy, the doctors have told us that we really need to make sure we all wash our hands before holding and touching him. They also strongly encourage us to screen visitors. If you have been ill, or have been around someone who has the flu or bad cold, please wait to visit until you are certain that you are over the illness. Paul and I are trying to do our best with keeping him as healthy as possible. Doctors have said that if he were to get ill, he could end up back in the hospital. However, don’t hesitate to call if you are feeling healthy and want to rock a very cute and lovable baby!

We thank you for your understanding,
Paul, Katie and Mitchell

Sunday, February 6, 2005 2:06 PM CST

It’s so nice to have Mitchell home with us. It was so fun bringing him home yesterday; there were happy tears all around. Many of the nurses had to give Mitchell good-bye hugs. As much as we wanted Mitchell home, it was kind of hard to leave the NICU. The staff almost seemed like family and we will miss them. Our friends Eric and Jenny decorated the house with streamers and put a sign on the garage door saying, “Welcome Home.” It made the homecoming a little more special!

Mitchell had a pretty good night last night. We struggled with the decision of waking him to eat or letting him sleep. We decided to let Mitchell sleep. When we asked the nurses about this before leaving, the majority said to wake him, some said to let him sleep. I guess we’ll continue to let him sleep at night until he gets weighed again and then if he is losing weight, we’ll have to wake him. There is a concern with the trisomy that he will not gain weight, but as you can see from the pictures he hasn’t had problems with that so far. He has been eating pretty well though I would like to see him take a little more. However, this is a big transition for Mitchell and it may take a couple of days.

Paul and I have really enjoyed just lounging around with Mitchell. We take turns changing him, feeding him and holding him. Mitchell has really enjoyed his vibrating chair and swing. He loves to look outside; he never got to do that being in the NICU.
Mercury (the cat) has done well with Mitch so far. She was even sitting on Paul’s lap with Mitchell this morning. I wish we could’ve gotten a picture (I was still sleeping). She seems to be acting like he has just always been here.

Tonight is a big night for Mitchell…his first Super Bowl. I’m sure dad is going to enjoy telling Mitchell all he needs to know about football.

Enjoying family time,
Paul, Katie and Mitchell

Saturday, February 5, 2005 11:50 AM CST

Mitchell is home!

Friday, February 4, 2005 10:05 PM CST

Katie had a good time last night with the little guy. He was pretty awake and wanted to hang out with her until 2:30 but he slept great after a meal. In fact Katie had to wake Mitchell up at 6:30 for his next feeding. The heart/apnea monitor didn’t go off during the night; in fact it hasn’t gone off at all except when Mitchell is pretty angry. When he does get agitated the monitor doesn’t pick up a good reading which in turn causes the fire alarm loud noise to ring out and wake up the neighborhood. This is actually great news in that Mitchell’s normal day-to-day life hasn’t been life threatening and the only cause for the alarms is the bad readings caused by Mitchell’s increased activity. Mitchell had another nice day today and seems strong enough to head home. We are excited to show Mitchell that there is more to life than a basinet. We look forward to introducing him to Mercury and giving him a tour of the house (especially the carpets). Katie and I think he is ready to roll over if given enough room. We both feel he has progressed so far and look forward to all the milestones he will be able to accomplish next week and the years to come.

Tonight Katie and I went out for supper and came home to watch a movie. Tomorrow we get to bring Mitchell home.

Love,
Paul, Katie and Mitchell

Thursday, February 3, 2005 10:17 PM CST

Mitchell got introduced to his car seat today. Before coming home he had to pass a car seat test. This is where he has to sit in the car seat for an hour without his heart rate or oxygen going down. The nurse said he did a great job and loved sitting in it.

The OT also did some testing on him today. She was checking for reflexes and muscle tone. She said that Mitchell did well in all of the areas. He scored a little lower with tracking objects, but was able to do it. The OT believed that this would get better once he gets into a normal environment and isn’t stuck in a bassinet all the time.

Mitchell had his circumcision last night. He was a little uncomfortable when we left last night (go figure), but seems to be doing fine today. I’m anxious to tell you tomorrow how Mitchell’s and my slumber party went. I’m hoping that we slumber a little more than we party, but we’ll see!

Homecoming is soon,
Paul, Katie and Mitchell

Wednesday, February 2, 2005 8:34 PM CST

Mitchell was rather sleepy today. However, he had another big night of eating so he had no problems meeting his calorie minimum. His feeding tube got taken out last night and we continue to move closer and closer to getting home.

I am planning on staying over night in the hospital with Mitchell tomorrow. The hospital has a “rooming in” option for parents with babies discharged from the NICU. Paul and I believe that this will be very helpful. I will have a room right next to the overflow room that he is currently in. The nurses will still need to come get his vitals every few hours but basically we’ll be on our own. It will be comforting knowing that they will just be a shout away. If after staying with him, I do not feel comfortable yet, I can stay another night. Paul will stay with us until about 9:00 and then come home and get some sleep because he will work on Friday. He is looking at taking some time off when Mitchell gets home. We are looking forward to that day…looks like it may be soon.

Resting up,
Katie, Paul and Mitchell

Tuesday, February 1, 2005 7:55 PM CST

The one thing left for Mitchell to do is eat well before he comes home. He had his best 24 hours last night and today at eating. He is back on his own schedule for eating, in which we are very pleased. This means Mitchell needs to eat a minimum amount of food in twelve hours in order gain weight. He blew that amount away by quite a bit and it’s been such a relief to see him progress this far in a week. Katie and I are looking forward to tomorrow to see if Mitchell is back to gaining weight like he did before the surgeries and we’re looking forward to see if he can continue to eat at this good rate. The little guy is also back on a fortified milk diet. Mother’s milk has a natural calorie count of 20 Cal per ounce. By adding powered formula to the milk we can increase the calorie count by not increasing the total amount of fluid Mitchell needs to suck in. So now we have two things going for us (increased ability of Mitchell to feed and extra calories in the milk he drinks) to help us reach the goal of Mitchell being able to feed under his own power and gain weight.

Katie and I feel that Mitchell is close to being sent home. The doctors are not going to push the little guy out the door though. There are still a few things to take care of before discharge and we need to see if Mitchell can continue at the pace he has been on for the last week.

January is over,
Paul, Katie and Mitchell

Monday, January 31, 2005 9:30 PM CST

Mitchell had a little slower day today with his feedings. He is feedings well, he is just not taking as much as he needs to. We are confident that with time he will be back to where he was pre-surgery. He was taking just breast milk but due to losing a little weight, they are starting to fortify the milk again to add some extra calories. At this time he is using more calories (because he has to work so hard to eat) than he is getting. With the added calories, he will not have to take as much milk and therefore will not tucker himself out.

Overall, Mitchell is doing quite well. He is able to keep his oxygen saturations up and is really doing a nice job of breathing. The doctors and nurses say that it is now up to Mitchell as to when he gets to come home. Once he meets his feeding minimum, and gains weight, he can come home. The doctor tonight said she would think about sending him home with his feeding tube in if we would feel comfortable with that. Even though Paul and I want him home soon, we believe that he can meet his feeding minimum and will soon. We are willing to just be patient with him and wait until he is ready.

It is so nice to be in the overflow rooms. So far Paul and I have been the only parents in the room. This is nice because it gives us a little more room than the regular NICU.

More news soon,
Katie, Paul and Mitchell

Sunday, January 30, 2005 8:44 PM CST

The nursing staff hummed Pomp and Circumstance (Graduation Song) as we helped move Mitchell into the “overflow” room last night. This is a benchmark for Mitchell, as only the most stable babies can be moved over to those rooms. (One more exciting step towards going home.) Typically they do not use these rooms, however with the number of babies in the NICU, they needed the extra space. Mitchell is 1 of 3 babies in a patient type room. He shares a nurse with the other 2 babies. The room is not as busy and much quieter than the noisy NICU. There aren’t as many bells and whistles due to only having a couple babies in there. Paul and I felt very comfortable in the room.

Mitchell continues to work on his feedings. We are hoping that he will get put back on his schedule tomorrow. He has a hard time finishing his bottles when he is on the 3-hour schedule, but does a nice job when he can pace himself. This way, he can eat whenever he wants and however much he wants. Mitchell seems to like that better because during the day he likes to eat a smaller amount and at night he likes to eat less but seems to like bigger quantities.

Mitchell had many visitors today. Aunt LaVonne came up to rock Mitchell a little bit. They both really enjoyed each other’s company! LaVonne enjoyed seeing how comical our little Mitchell can be while eating. Cousins Matt and Angie came up to see Mitchell as well. By this time, Mitchell was fast asleep. However, he still loved being rocked by both of them. Ed and Sarah (friends from Nevis) also got to get in on the rocking. Mitchell showed everyone what a good little baby he is. (Hope he is that content at home as well!)

Once again we are looking forward to the trip home and once again Mitchell seems to get closer and closer everyday. It is hard not to look ahead and get excited, but Mitchell has taught us that we need to just take one day at a time.

Thanks for the support,
Paul, Katie and Mitchell

Saturday, January 29, 2005 8:46 PM CST

Here it is! I know it’s been what everyone has been waiting for, the process on how to feed Mitchell. You will be quizzed on this when you visit and tested if you baby-sit.

First of all you need to recognize that Mitchell is hungry. This is pretty easy; he starts crying. He will also start rooting around and try to put anything he can grab in his mouth. When Mitchell finds out that object doesn’t contain milk he will start crying while searching for the next thing to stick in his mouth. This would be a good point to start warming up some milk. Fill up a bottle and run it under hot water until it becomes room temperature. To keep Mitchell half way content trick him with a pacifier. This will work for a minute at maximum so you need to be good at this next step.

Mitchell uses a Haberman bottle for his feeding. This bottle has two chambers instead of the usual one for the milk. The two-chamber system helps deliver the milk easier when Mitchell sucks. Because Mitchell’s palate isn’t formed correctly he doesn’t have anything to push against to draw out the liquid. The bottom chamber of the bottle pushes air into the top chamber, which in turn pushes milk into Mitchell’s mouth when he sucks. The pressure helps to counteract the lack of sucking power. The bottle has five parts to putting it together. The package contains a bottle, nipple, filter, cylinder and screw cap. First fit the filter into the cylinder making sure that it is completely inserted. Second place that piece filter up against the nipple. Side the screw cap over the nipple and attached it to the bottle. If you attach it to tight, when you squeeze the nipple it will not reform to its original shape and not draw in any liquid. If you attach the top to loosely there will not be a good seal and milk will spill out the side when you try to feed. When you have found a happy medium you are now ready to feed. Squeeze the top chamber and turn the bottle upside down. Slowly let the nipple return to its original shape and as it does milk will be drawn into it by the bottle.

Sit Mitchell upright on your leg bracing his neck and head with one of your hands. He needs to be laying back slightly so if he decides to head butt forward you’ll have enough reaction time to stop him from flopping his head into your lap. Bring the bottle close to his bottom lip and wait for him to reach for it. When he does you can place it in his mouth so the long line on the nipple is facing his nose, this will let him draw out the maximum amount of milk with each suck. Let Mitchell drink until he stops sucking. When he stops this means he needs to catch up on his breathing. Remove the bottle and let him rest and breathe for a while. When he starts to root a little he is ready for more. Again place the nipple close to his lips and wait for him to grab it. Repeat this process until he doesn’t look interested in feeding any more.

This means it’s time for some tricks. We need to start waking him up again by making Mitchell feel a little uncomfortable. If he’s swaddled remove the blanket to cool him off some. This startles him some and reminds that he is eating. Some other tricks are to reposition him and see if he needs to burp (you’ll know one when you hear one). When these techniques don’t work anymore its time to get serious. We all know how work up Mitchell gets when he has his diaper changed and this is a perfect time to do it. Not only does he get nice and clean, he may even wake up enough to finish his bottle. When all these steps have been tried he is finished. You may try to burp him again but never try to squeeze any milk into his throat. This is very dangerous to Mitchell. If the milk is squeezed into his mouth he will start to aspirate some of it and his trachea will collapse shut. This cause Mitchell to stop breathing and it’s tricky to get him breathing again.

If Mitchell does forget to breathe here are some steps to get him going again. The first sign that Mitchell is having problems is that he will look like a statue. Mitchell will become completely still and you’ll notice that his chest doesn’t move up and down. At this point Mitchell’s face and forehead will become somewhat dusky or blue grey in color. To stimulate Mitchell’s lungs to work and his trachea to open you need to rub his head and back a little. Sometimes picking him up and changing positions will work and getting him to breathe again. At last resort some rescue breathing will force some air into his lungs and allow the trachea to open. Katie and I learned all about rescue breathing in CPR class this last month. We will also take home with us a monitoring system and an oxygen tank just incase we need some extra help.

Hope I didn’t bore you too much,
Paul the Science Guy

Friday, January 28, 2005 10:14 PM CST

It was another great day for Mitchell. Hopefully we are turning the bend and getting on the path to coming home. Mitchell continued to eat well today. He was awake pretty much all day. He finally fell to sleep at about 8:00 tonight, which made his 9:00 feeding a little slow. He still did pretty well though, taking about 2 oz. This is the best we’ve seen Mitchell feed on a continual basis. Mitchell is also very content these days. He complains less and does a very nice job keeping his lungs working well.

Tonight Mitchell got to meet his Great Grandma and Grandpa Miller. Grandpa and Grandma loved holding and rocking him. Mitchell was such a good little boy, he was pretty alert during most of their visit. It is always fun to show Mitchell off.

Getting stronger,
Paul, Katie and Mitchell

Thursday, January 27, 2005 10:20 PM CST

What a wonderful day we had today! Mitchell started feeding on his own! This morning he took 8ml (not even ½ an oz). You would’ve thought he took a gallon by the smile on my face and the tears of joy in my eyes. I was so excited and proud of him! Little did we know that this was just the beginning of his big day. The next feeding he took another 8ml by himself. I think Mitchell was waiting to show off for dad, because at our 6:00 feeding he took his ENTIRE bottle (a little over 2oz) on his own! We (Paul, myself and the nurses) were so excited and happy for Mitchell.

Mitchell really seemed to be getting back to his old self today. It was so fun to see him back to normal; he even cracked a few smiles. Tonight Mitchell was very alert for dad. This is the first time he has been alert since his surgery a week ago. It was a relief for Paul and I to see him happy and content again.

It is amazing that with all of the ups and downs we’ve had, I can truly say that the ups outweigh the downs by a long shot! We are so truly blessed to have such an amazing little boy. I have never felt more proud than I do tonight!

Getting over the hurdles,
Katie, Paul and Mitchell

Wednesday, January 26, 2005 9:52 PM CST

It has been a rough week for Mitchell after surgery last Thursday. He has not been able to eat on his own very well, in fact the last couple of days he hasn’t taken any of his milk from the bottle. He sucks on his pacifier well but when he has a bottle he refuses to draw the fluid out because he just doesn’t want to swallow. Last Thursday’s surgery went well, but the staff had a difficult time with the intibating of Mitchell. We feel that this has caused significant irritation in Mitchell’s throat and esophagus and it may cause him some pain when he needs to swallow. The doctors are slowly decreasing his IV nutrients in hopes that this will jump-start his willingness to eat more. So far this hasn’t worked, so the nurses now need to feed Mitchell through a tube insert though his throat into his stomach. We still try to bottle feed him first but the milk he doesn’t take on his own is then feed to him through the tube. Mitchell also received a blood transfusion last night. He was given 80 ml of O negative blood to help him regain some of his strength lost this last week. This seemed to work very well because Mitchell was calm throughout the day and caught up on the sleep he’s missed from the last couple days of uncomfort. My Uncle Jack and Aunt Carol came to visit the little guy tonight and did a great job rocking him. Mitchell was so content with the motion and seemed to be a lot more comfortable being held today. He still lets us know when he is hungry by becoming extremely upset. Hopefully soon he’ll be able to do some of the feedings on his own again. We just need patience and let Mitchell have some needed time to recover.

Thank you for your prayers,
Paul, Katie and Mitchell

Tuesday, January 25, 2005 7:37 PM CST

I just can’t seem to wake up and eat after last week. I’ve decided that if I keep sleeping, maybe those Doctors will stop picking on me. Once in a while I like to open one eye just enough to make sure that my Mom and Dad are still here watching me, but just for a second. I am still so sore from all of the poking and prodding. The nurses give me some stuff that tastes like grapes and it helps a little but I just feel blah. Mom says everyone has those kinds of days. Especially if they would go through what I have in the last week!

Mom and Dad want me to eat so badly, but my throat and tummy still hurts. I think that I’m just going to take my time. Right now I just like to sleep in my bed or the swing…I’ll get hungry sometime, and then I’ll eat. (Or if they tell me they have to put a tube down my throat)

A new doctor came in today and took a look at me. He seemed different than the other doctors. This one measured my ears, poked at my head, looked at my skin, fiddled with my extra pinky, played with my arms and legs, and looked in my mouth. I heard him talk to Mom and Dad about some pretty complex things but then told them that I looked pretty normal. He also said that he has never seen a baby like me before. Mom and Dad say that I’m extra special, everyone is interested in me and how I grow. They told the doctor that they would keep in touch with him to let him know how I’m doing.

I met my match in the NICU last night. I saw the nurses bring in another baby. She weighted over 9 lbs! That’s what I weigh now, and she was just born! I guess I’m not the big kid on the block anymore! I’m still the biggest boy though! (And I think I’m still nurses’ favorite)

Off to sleep,
Mitchell, Mom and Dad

Monday, January 24, 2005 8:38 PM CST

Mitchell had another good day. He slept all through my morning visit. I didn’t hold him or really even touch him because he looked so comfortable, I didn’t want to wake him.
Tonight Mitchell was a little fussy. He seems to be a little different than he was before his surgeries. He likes to be held differently, soothed differently; he even likes to eat a little differently! I guess he just decided to change his mind on a few things he thought he liked. One thing for sure is that he sure does keep us guessing what he’ll do next!

The nurse practitioner said that she thought Mitchell looked so much better than he did on Friday. (The last time she worked) She also said that he should be up to full feedings on Wednesday. This means he should be off of IV fluids by Tuesday night or Wednesday.

Mitchell will have a blood transfusion tomorrow. He has lost some blood due to getting so much lab work done and from the 2 surgeries. The doctor insured us that this is nothing out of the ordinary and that he shouldn’t need that much. He will get this through the IV in his groin, so he wont need any new pokes for the transfusion.

Paul and I meet with a doctor that specializes in genetics tomorrow morning. He will examine Mitchell and then talk to us about Mitchell’s chromosomal abnormalities. We’ll let you know tomorrow what he has to say about our little guy.

Until tomorrow,
Paul, Katie and Mitchell

Sunday, January 23, 2005 8:04 PM CST

Mitchell is up to nine pounds today. Mostly it is due to the IV nutrients and lipids being feed to him, but we can see he is starting to get hungry for some real food. We started to feed him today but very slowly. Mitchell gets 10 ml (1/3 ounce) of milk every three hours and if he does well the amount will continue to be increased until he finally gets to have the IV removed again. He did well with his first two feedings, and we expect that to continue throughout the night. Katie and I got to hold Mitchell for the first time today since Thursday before surgery. He loved being held by mom and seemed to have a lot to say. He spent much of that time telling stories although we have a hard time deciphering his code. I also got to hold the little guy for a while but he seemed to enjoy that less. His pain medication had worn off by that time and we had a difficult time finding a comfortable position for Mitchell to lay. We got Mitchell back to his bed and the nurse gave him some Tylenol to help with the pain. Two separate surgeries in a week has to be tough, but Mitchell is doing well and Katie and I look forward to slow but steady progress. We also saw great improvement in Mitchell’s breathing effort today. His chest doesn’t retract as much as it did yesterday and he needed fewer breaths to take in the oxygen he requires.

It was a great day,
Paul, Katie and Mitchell

Saturday, January 22, 2005 9:25 PM CST

Well, nothing really too exciting happened today. The doctor took Mitchell off of the ventilator this afternoon. They are watching him closely to make sure that he continues to breathe. Mitchell is working pretty hard to breathe on his own right now. If they feel he is working too hard, they may put him back on the ventilator until he is a little stronger.

Hopefully tonight they will start feeding Mitchell. The nurse said that they would start with 5ml (about 1 Tablespoon) to see how he handles it. They have heard bowel sounds, which means his intestines are beginning to move things through.

Mitchell was more awake this evening. It was fun to see his eyes open and yet it was hard knowing that we could not hold him. He had good color though and we could see that he was happy to see mom and dad.

Thanks for the prayers,
Paul, Katie and Mitchell

Friday, January 21, 2005 8:07 PM CST

It has been a pretty uneventful day for Mitchell. He continues to be intibated but they are discussing whether to extibate (take the tube to his lungs out) him tonight or in the morning. Mitchell is only being ventilated with regular air (without added oxygen), but at times seems to struggle with getting good deep breaths. He is starting to come down from the pain medicine and is showing signs of being annoyed with the tubes in his mouth. The trick is deciding how well Mitchell will be able to breathe on his own without the extra help. A chest x-ray was ordered and the decision to extibate tonight or re-medicate will be based on what they see in the lung function.

There wasn’t much for us to do today. We couldn’t hold him because of all his extra attachments and it is hard to only sit and watch him. Tomorrow Mitchell should start to come around to normal and hopefully start back on the path to coming home. The doctors and nurses are truly professional and we know that their care is what Mitchell needs right now, but we can even see in their eyes the disbelief in the roller coaster that this little baby is on. They know as well as us that Mitchell can have outstanding days and even group those days in a row. At times we have been close to having Mitchell go home, and it’s been hard for the care providers to see Mitchell continue to develop new problems that take some extra time to resolve. They continue to address them aggressively and take the time to visit and fully explain what they feel is best for Mitchell. Their professionalism and knowledge is only dwarfed by their compassion. To see them tear up and at a loss of words tell Katie and I all we need to know. They love their job, but most importantly they love their patients and want nothing more than to send home with us a stable healthy baby.

God bless the health care professionals,
Paul, Katie and Mitchell

Thursday, January 20, 2005 10:49 PM CST

Today there is good news and bad news. The good news is the doctors have figured out why Mitchell is unable to keep anything down. The bad news is that Mitchell will have to have another surgery. An upper GI showed that Mitchell has Pyloric Stenosis (Heather you should be a Dr!). This is when the Pyloric Valve (opening at the bottom of the stomach) gets bigger overtime and blocks the stomach from emptying. When Mitchell eats, his stomach gets too full and that is when he spits up…or should I say has his projectile vomiting. Lets just say the NICU has gone through more blankets, burp cloths and sleepers in the last 2 days! Pyloric Stenosis tends to be more common in the 1st born male. It also tends to develop after the 1st month of life in 1 of 400 babies (right up Mitchell’s alley for luck).

Mitchell also got his 1st haircut today. Because he is unable to eat due to his stomach problems, they had to put another IV in the scalp (they ran out of places to insert an IV in Mitchell’s arms and legs). The spot they found didn’t last very long, so the doctor spent time looking for a more suitable place. With Mitchell’s long hair, they needed to shave a little in order to get a better look at the veins. However they couldn’t find a big enough vein to use in his scalp so they tried to find a spot in Mitchell’s groin. After three hours of work the doctors were able to locate the femoral vein to place a more permanent stint. The NICU doctor says that this IV will be able to last a lot longer and shouldn’t need replacing until next week if it is even needed that long. They are pretty confident that after the surgery Mitchell will be back to eating as usual in a day or so.

Mitchell was taken to the operating room at 8:00 pm to start the procedure to fix the Pyloric Stenosis. The surgery is NOT an emergency; Dr. Monson decided to perform the surgery tonight instead of waiting for next week because his schedule is pretty busy for the next couple days. This was the same surgeon that Mitchell had for his hernia correction. The surgery lasted until 9:00 pm and everything went well. He was under a strong sedative and will be on a ventilator until at least the morning. When he makes his recovery Mitchell will begin to feed again and work his way off of the IV nourishment again. We don’t know how long this will last, but we hope the little guy will make a speedy recovery. We will know more tomorrow.

Mitchell also had a head and stomach ultrasound today. The reason for the stomach ultrasound was to confirm the Pyloric Stenosis. The doctors needed a brain ultrasound to see if the small amount of blood on Mitchell’s brain had subsided and to make sure the brain is developing correctly. We are very anxious to get the brain ultrasound results and should get them tomorrow.

Thank you for your prayers and support,
Katie, Paul and Mitchell

Wednesday, January 19, 2005 7:21 PM CST

Mitchell had a tough day today. The good news is, it wasn’t with his oxygen saturation. Mitchell just isn’t himself today. We have tried feeding him again and he just isn’t able to keep it down. The doctor didn’t seem too concerned today about it. He thought that it might be just a reaction to the sedation from Monday. It is sad to see the little guy so uncomfortable. Today I fed him a little and then just left him in his bed pretty much all day. He was very content just sleeping and being left alone today. (A big sign that he isn’t feeling well) The doctor was more concerned about his IV sites. Poor little Mitchell has been poked so many times; they are running out of sites to put the IV. Today they had to put an IV in his scalp. The nurse said that he did okay with it.

Hopefully we can get back on track with eating tomorrow. I’m guessing that the doctor will have me try to start feedings again and we’ll see if he can keep it down. Paul and I thought it was a good sign though that even when he was spitting up so much, he was still able to keep his breathing under control. This was a very positive sign for us.
We also went through training tonight for the apnea monitor and oxygen. It sounds like Mitchell will need to be on the monitor whenever he is sleeping and when we aren’t holding him. I was amazed to hear how loud the monitor is! I wont be sleeping through that, nor will anyone else in the cul-de-sac! It was a little overwhelming but I’m sure that we will get the hang of it…and if not we’ll just hear a lot of false alarms.

I am unsure of how Mitchell’s feeding issues are going to affect his homecoming. Like I said, the good news is that he is keeping his oxygen stabilized. I would guess that as long as he is keeping food down on that 5th day (Saturday or Sunday), he would be able to come home. We are required to stay in the hospital with him for at least one night before he comes home. You’ll know as soon as we know when that day comes!

Hoping for no spits tomorrow,
Katie, Paul and Mitchell

Tuesday, January 18, 2005 9:03 PM CST

Mitchell had a very good day today. Katie called and updated me throughout the day on Mitchell’s progress and we are all impressed with his recovery. The doctors had the IV removed last night and he is starting to get back to eating like he had in the past. Each meal is bigger and better than the previous one. It has really amazed me how quickly Mitchell’s turn around has been from the surgery. He is growing and getting stronger each day. He is up to 8lbs. 10oz. and in no time will be at the minimum 10 pounds needed to start his cleft surgeries. They might begin as little as eight weeks from now. Now Mitchell needs five good days until we will be able to bring him home. We have decided that a tracheotomy is not in Mitchell’s best interest, and are confident that he will develop stronger with each day. The doctors seem to feel we are making a good decision as well. Sunday’s episode is something that could probably be prevented, and with a little care, should not happen in the future. Tomorrow Katie and I will be trained on the use of the heart and oxygen saturation monitor. We will also have oxygen sent home with us in case of an emergency. We will be trained on that as well, especially how to do the bagging process correctly.

It has been anxious yet exciting to watch Mitchell’s progression. He has become less irritable when being changed and washed although he can still get quite mad. He continues to eat better and more although he is still a tricky one to feed. We feel his muscles getting stronger, hope his hearing is getting better and his sight is improving, but there are still concerns about his future development. We are a little nervous to take him home, but we know we are prepared to take care of him. Soon home will be the best place for Mitchell to be.

Love,
Paul, Katie and Mitchell

Monday, January 17, 2005 7:29 PM CST

Well we had a long but great day today. Mitchell’s surgery was outstanding. The surgeon and anesthesiologist said that they were impressed with how well it went and are not expecting any problems. Mitchell took to the anesthetic a lot better than we had thought he would. He seemed to wake up by the time he was back in the NICU, and you guessed it, was already trying to pull out the tubes. It was nice to see that he still had his temper even though he was a little groggy. (The picture is Mitchell with his cute surgery hat on! This is so he would stay warm. We thought it was so cute, we had to take pictures)

I think that the next 24/48 hours will be the true test. We have to make sure he continues to breathe and swallow. After surgery, Mitchell was one on one with a nurse and now tonight he is sharing one. Paul and I felt comfortable leaving the hospital tonight being his vitals seemed to be normal. The doctors are holding off his feedings until tomorrow morning due to a lot of air in his stomach. I will try to be at the hospital tomorrow for most if not all of his feedings.

With all of the happenings yesterday, Mitchell forgot to mention that he met his new friends Sally and Eric. He enjoyed being rocked by both of them. It was so nice to have them visit us! We do wish that Mitchell could have had a better day for them, but he still managed to open his eyes and even showed them how he could eat.

Thank you for all of the prayers today and everyday. It seems that we truly are on a rollercoaster at this time. Just as things seem to be excellent…something else comes along. But like I told Paul, I’d rather have it go up and down than just down all the time. We really have a lot to be thankful for!

Can’t wait to see him tomorrow,
Katie, Paul and Mitchell

Sunday, January 16, 2005 9:28 PM CST

It’s my birthday today! I’m one month old, and I decided to bring it in with a few surprises. I didn’t have a very good day today. During my feeding this morning I had an extremely hard time with my breathing. I don’t know if I swallowed something down the wrong pipe or just forgot to breathe on my own. The doctors told my parents they were very scared for my safety and had to bag me with an oxygen mask to get me to breathe on my own again. This was the first time I’ve needed this treatment besides recovering from the sedative given for my trachea examine. I continued to have some difficulties throughout the day, but as the time went on I truly felt better. It’s hard to explain why this happened, but I’m trying so hard to make it home with mom and dad. I’ve been doing so well lately, but the doctors are very worried something like this might happen in the future. My mom and dad have some very important decisions to make about my care. They need to decide if I should have a tracheotomy. A tube would be placed in my neck to help be to breathe by bypassing the part of my lungs that tend to collapse from time to time. With this procedure there would also be the opportunity insert a gastro tube to feed through an opening in my side that leads to my stomach. I wouldn’t likely spit up my food that way. I hardly ever spit up my food anyways, and it has never affected my breathing when I have. Another option is to continue to work on the progress I’ve made these last couple of weeks and with mom and dad’s help I can develop the strength to keep growing naturally on my own. This way I could continue to grow as I have and develop the parts of my body that I’m having a little difficulty with right now. There is still a lot to prepare for my trip home, but I know that mom and dad are doing the best for me. Please pray for them as they discuss what is important for me. All I really want to do right now is be cradled in their arms and rocked to sleep.

I love you Mom and Dad,
Mitchell

Saturday, January 15, 2005 9:23 PM CST

Mitchell had another great day today. He was a little sleepy at first, but by this afternoon he was definitely up and ready to play with Grandpa and Grandma. Paul and I found out a couple of weeks ago that it is harder to leave Mitchell when he is awake and looking into your eyes. Grandma and Grandpa found that out tonight, they had a tough time leaving their big brown-eyed boy. It was hard for Grandma to walk out of the NICU this afternoon, and if you know Grandma you would guess there were a few tears. (I think I saw some in Grandpa’s eyes as well, but don’t tell him that!)

Grandpa and Grandma had a great visit this weekend. Mitchell loved to be held and rocked by Grandma. He also liked taking a little snooze with Grandpa. Though, Grandpa wasn’t too impressed when Mitchell decided to fill his pants while sitting on his lap. Grandma and Mitchell had a really nice conversation this afternoon. I think they may have been talking about whether he is going to cheer for the Vikes tomorrow or if he is going to be like his Grandpa and Uncle Beckett and pout about their team not playing.

Mitchell now weighs 8 lbs 6 oz. He also got taken out of the “crabby boy bed” and put into a regular bassinet. (The other bed rocked and made womb sounds) All of the nurses can’t believe how Mitchell has matured in the last few weeks. He is a happy baby, most of the time. (Except when he has to wait for his bottle to warm up)

One month tomorrow,
Katie, Paul and Mitchell

Friday, January 14, 2005 8:51 PM CST

Mitchell’s hernia surgery has been moved up to Monday. Maybe he’ll be home by the end of next week. He has been doing very well and had a great day today. He did not need any oxygen therapy and feed very well today. Katie has gotten to spend a lot of time with the little guy in the mornings by themselves. She has really learned what his likes and dislikes are. Katie gave our son another bath this morning and Mitchell is learning to tolerate them better.

He sure is getting big and is becoming very active. It’s so much fun to watch him look around the room, follow voices and play games with his hands. He really liked looking and playing with Grandma tonight. I think he saw something familiar in Deb’s face and felt comfortable in her arms. Mitchell was also teaching Grandma how to feed him correctly. It is such a process to get it all down correctly. He was just teasing her tonight, but can’t wait to take the entire bottle from her tomorrow. It is so much fun watching Grandma hold and rock her grandson. They both enjoy it so much.

Grandpa’s turn tomorrow,
Paul, Katie and Mitchell

Thursday, January 13, 2005 9:15 PM CST

Mitchell is 4 weeks old today! I can’t believe how fast the last 4 weeks has gone! Mitchell had a big night of eating, and today he was eating pretty well. He seems to be a night owl and just likes to “snack” during the day. I think I’m going to have to become a night owl as well once he gets home. At this point we are so excited to get him home, I can’t wait to become a night owl!

We gave Mitchell a sponge bath tonight, he really didn’t do that bad. The nurse said that he really liked his last tub bath; I may attempt that tomorrow. We wanted to tonight, but the NICU just seemed a little busy for that tonight. We did get to take off all of his wires tonight to give him his sponge bath. For a brief minute Paul and I thought about running out with him! It was so nice to hold him for a while without any wires. I told Paul it was like he was a real baby!

The nurses today told me that they often fight about who gets Mitchell for the day. One of his nurses from “the other side” came in a little early and rocked him before her shift. I think Paul and I had better be careful, the nurses may want to keep him! It is so fun to see that even nurses that don’t have him anymore love to come and talk to us about his progress. We sure do have so many people who care for us.

Lucky to get so much attention,
Katie, Paul and Mitchell

Wednesday, January 12, 2005 9:45 PM CST

Mitchell is slowly getting back to his normal self. He still isn’t eating as much as he was before the CT Scan. Though I’m guessing that by the time I get there tomorrow morning, he will have had a night full of great feedings. Mitchell and I had a sleepy day today, we rocked all morning. I’m really loving our mornings together. Even though the days all seem to run together, (I’m never really sure what day it is) there is always something special about each and every day that sets them all apart. Today I enjoyed watching Mitchell make different facial expressions; some of them really cracked me up!

Tonight Paul and I talked to the doctor a little more about Mitchell’s surgery coming up. The doctor is trying to move the surgery to Monday. This is good news for us, because hopefully that means he will be home a few days sooner! As much as we love the doctors and nurses at the NICU, we can’t express enough how nice it will be to finally get him home. We are definitely ready to “figure” Mitchell out for ourselves. Do the trial and error thing parents do.

Eatin’ all we can,
Katie, Paul and Mitchell

Tuesday, January 11, 2005 7:52 PM CST

Katie and I found some things out today, and Mitchell can start to see the way home. His hernia surgery is scheduled for next Wednesday. We were hoping for the end of this week, but it is very relieving to have a date set. After that, Mitchell will need to have five great days of good blood pressure, no oxygen saturation drops or apnea spells, and continued weight gain. I have to remind myself not to get too impatient, but it will be hard to wait for another couple weeks. It’s kind of like the beginning of December with presents under the Christmas tree and trying to guess at what I’ll be able to play with in January. Mitchell is where he needs to be right now, but soon he will be
home with mom and dad.

Mitchell had a fine day today. He was definitely more alert and a little more crabby than usual during the morning. We thought his throat might have been a little raw still, but it turned out we just needed to suction out the back of his throat. After that, he had a stellar day. It was probably because about that time Nana was able to come in and rock the little guy. Mitchell was eating better as the day went on and even allowed Nana to feed him tonight. He thought she did a wonderful job and rewarded her by eating a majority of the bottle before falling asleep.

We’re catching on,
Paul, Katie and Mitchell

Hello from Nana… I am in Moorhead for my “rocking-Mitchell” fix after two weeks of following his progress on caringbridge and an occasional phone check-in. Mitch is visibly larger, weighs 8#5oz this morning! He is eating like a trooper and it’s great to see the feeding tube gone. He is getting some fluid by IV because of being sedated yesterday for his MRI. He definitely lets Mom and Dad know when he’s hungry and after eating stays awake and alert for an hour or so, gazing around. We saw what we thought was a smile today! I remembered that Mitchell’s dad smiled for the first time on MY birthday when he was three weeks old. Love you, Mitchell!! Nana Trudy

Monday, January 10, 2005 10:01 PM CST

Mitchell had his CT scan of his chest today. It shows that his left lung is not bigger than it should be and that nothing is pushing the trachea shut where it enters the left lung. This is outstanding news on both accounts. It still means that the trachea isn’t quite performing the way it should, but the two dangerous causes the doctors were worried about can be ruled out. At this point, there will be no surgery. He will be continued to be monitored for the next year and hopes are that the muscle controlling the affected part of the trachea will become stronger on it’s own. The doctors are concerned about respiratory diseases because of the lack of ability to cough out the germs. They were very relieved to hear that Katie will be a stay at home mom instead of sending Mitchell to a daycare where there is an increased risk of getting colds. The surgeon wants to see if this problem will relieve itself before talking about surgery. They feel that Mitchell is doing nicely so far at dealing with the setback and think it will continue to improve.

Tomorrow will also be a big day for our family. The doctors will start to discuss a time line for Mitchell to come home. We are going to set up surgery time for Mitchell to have his hernia fixed, sixth digit removed and circumcision. After that, Mitchell will need to go five days without needing any help from oxygen therapy and continue to get enough nutrition from the bottle. Finally Katie and I will need to be trained on an oxygen saturation monitoring system that will be sent home with us. This will help us identify when Mitchell’s oxygen levels have dropped too low, and alert us so we can help stimulate his breathing again. We took the first step tonight by updating our Infant CPR and First Aid Certification at a class offered at the Red Cross.

Looking forward,
Paul, Katie and Mitchell

Sunday, January 9, 2005 9:09 PM CST

I had a great day today! My mom and dad came and held me almost all day! I didn’t feel as sleepy today and I even drank my bottles! Tonight dad gave me my bottle. I ate all of it and then some! Both mom and dad were so proud of me! It is so nice when I get to pick when I get to eat. All I have to do is cry and act like I want to suck on something, and boy do the nurses move fast! They are learning that when I want to eat…I mean business! They are so happy when I am finished because then I am awake and they like to talk to me and rock me! (I like it too)

It was fun hanging out with mom and dad today. They left me for a little while; they said something about a “big game”. They came back and told me that their team won! Mom said that my Uncle Beckett and Grandpa Dave are probably really sad tonight because their team lost. She says that when I get older, I’m going to have to pick between being a Packer fan and a Viking fan. I’m not really sure what that means right now, but dad says I’ll learn. He even told me that I already have a football in my room!

My cousin Megan sent me another message. She writes to me a couple of times a week. Mom and dad said that as soon as I get better and get out of the hospital, we’ll visit her and all of my other cousins in Nevis. Dad says that we are going to have so much fun playing together! It sounds like such a fun place!

Tomorrow mom says that I have another test. The doctors sure like to poke at me! Mom says that this one wont hurt and if I’m good I wont even have to have any medicine to make me sleepy. I heard mom and dad tell the nurse that it might be helpful if they feed me before the test. They know me so well already!

Wish Me Luck Tomorrow!
Mitchell, Paul and Katie

Saturday, January 8, 2005 11:48 PM CST

Mitchell was pretty sleepy this morning and so was I. It was great rocking him and closing my eyes for a while. He didn’t eat this morning due to lingering effects of yesterday’s sedative. Mitchell is also hooked up to an IV to get his calories for the day. The nurses also said that he had some breathing difficulties during the night but Mitchell seems to be doing better as the medications wear off. He was very alert tonight and did a great job feeding during the day. We look forward to getting the IV back out and seeing if he can continue to eat well and gain weight. There were some breathing episodes today where Mitchell needed more oxygen help than usual. It is probably caused by some hangover affects from yesterday. It was so much fun spending the day with the little guy, especially tonight when he was so awake. Just like any baby, he loves to look around and enjoy the scenery. He’s got a strong grip, and those who have seen him know how he loves to be held a rocked.

Looking forward to tomorrow,
Paul, Katie and Mitchell

Friday, January 7, 2005 8:00 PM CST

The throat surgeon was in to take a look at Mitchell tonight. The NICU doctors were concerned about Mitchell’s raspy cough when he cries. It sounded to them that there was a build up of liquid in his lungs, and they were afraid that he had been aspirating some of his milk when he feeds. The surgeon sedated him and threaded a camera into his trachea. He was looking for abnormalities in the connections between the esophagus and the trachea where small amount of liquid could sneak into the lungs. He found that there were no problems in that area, so he moved the scope further down towards the lungs. The surgeon found that at the area where the trachea separates into the entrances of the right and left lungs there is a problem. It seems that the airway into the left lung does not completely open and at sometimes collapses shut. Mitchell has no problem getting air into that lung because the air pressure is strong enough to open the airway. What Mitchell has a hard time doing is expelling air back out. This causes the lung to hyper expand and retain air (and liquid) that usually is released. By retaining this liquid also causes a very dangerous risk of respiratory diseases if Mitchell is unable to cough the bacteria out of his lung. The surgeon also said that the lung could continue to expand if the muscles that open the trachea do not start doing their job. They also feel that this pushes the heart out of position to the right of his chest which in turn could cause blood flow problems back to the muscles that work the left lung. The surgeon has not seen very many cases like this during his career, and usually in older children. The doctors would not speculate any further about what action will be needed to correct the problem. The surgeon first wants to review a CT scan of Mitchell’s chest to take a better look at how his heart and lungs are developing and working. The CT is scheduled for Monday and we will know the results by Tuesday afternoon. At that time we will discuss options of treatments for Mitchell.

It’s been a hard week, but Katie and I are truly doing well. We’ve learn to take it one day at a time, and with the grace of God and the help of friends we go to bed looking forward to what tomorrow brings.

Keep us in your prayers,
Paul, Katie and Mitchell

Thursday, January 6, 2005 9:04 PM CST

It’s been hard to go to work this week. I would have rather gone to visit Mitchell in the hospital in the mornings, but it was nice to get back to teaching. It has been great talking to colleges and students this last week. It has been very helpful to visit with friends and to lean on them for support. I am truly blessed; I couldn’t imagine working anywhere else. Katie feels the same way. She loved visiting with everyone this last week, and it’s hard for her not being able to work and talk with all of you. She can’t wait to bring around Mitchell and let you see what we’ve been bragging about for three weeks. We really appreciate all the support we’ve gotten in Moorhead and love talking to you when we get the chance.

Mitchell did great eating on his own schedule last night, but doesn’t do quite as well during the day. He is still gaining weight (7.12) and we hope he can continue to do so. He did need a little oxygen today. This is really the first time in awhile that he has needed it.

He is going to get his throat looked at tomorrow. They are going to examine him with a camera scope to see if his esophagus is developing correctly. The harsh coughing noise Mitchell has for a cry has the staff worrying a little. The results of this test will give us more of an idea of when Mitchell will be home.

Grandpa Cordes and Great-Grandma Cordes came to visit Mitchell this evening. They loved holding him, and he loved it just as much. It was a nice surprise to have them visit. It still amazes me the affect Mitchell has on us.

Thank you,
Paul, Katie and Mitchell

Wednesday, January 5, 2005 7:58 PM CST

Today was a frustrating day for myself. Mitchell had a tough time with his feedings, and just seemed to be extremely fussy. Paul says it is because Mitchell misses seeing him in the morning. I believe that he was just being a baby and having a fussy day. (Though I know he misses his daddy in the morning) Because of his bad day, the nurse practitioner wanted to put Mitchell’s feeding tube back in tonight. Paul and I talked to her about giving him more of a chance. (I’m guessing that not all babies finish every single bottle they are given) She said that we could continue to try feeding him soley with the bottle at least for tonight. We also discussed Mitchell’s feeding schedule. He was on a 3-hour schedule, couldn’t eat sooner, and couldn’t eat later. I had a problem with this because Mitchell seems to show signs of hunger (crying his eyes out and rooting) about ½ hour before almost every feeding. This is so horrible to watch because we know how to fix it and yet can’t because of the “schedule”. Mitchell also wastes a lot of his energy on fussing and therefore doesn’t have a great feeding. The nurse decided that we would go by Mitchell’s schedule and see how that goes. I’m interested to see how that works.

The doctor was trying to get Mitchell’s surgeries (hernia, extra digit and circ.) scheduled for Friday. This ended up not working, however he will still have the airway test done so we can get to the bottom of his coughing. He may have his hernia done as an outpatient. It sounds like if all goes well, he might be coming home soon. We are very excited for this. I know that Paul misses seeing him in the morning. At least if he is home, he can see him a little bit before he goes to work. It even sounded like this weekend could be a possibility, though I’m thinking maybe early next week. It all depends on what they decide to do with his cough and feedings.

Can’t wait to get home!
Paul, Katie and Mitchell

Tuesday, January 4, 2005 7:07 PM CST

Mitchell had another great day. He is continuing to strive on his bottle feedings and is continuing to gain weight. He overall was a happier boy today. It seems that the nurses are getting to know him better (Giving him what he wants when he wants it). We even had a few of his old nurses come over from the other side of the NICU to see how he was progressing. (He was over there his 1st week) They were excited to see that he was without his tube and to see how he has grown! (And his cheeks!)

We talked to the doctor today about when Mitchell will get to go home. He said that if everything continues as is (meaning he is thriving), he would not be there much longer. Paul told him that as much as we like all of the staff in the NICU, we hope once we leave we never have to see them again. The doctor agreed (though said maybe we’d see him at the mall).

Mitchell will meet with the ear, nose & throat doctor on Friday. They will be looking at his airway making sure that everything looks normal. This test is due to the cough that Mitchell has had since birth. He tends to cough/bark when he cries. They hopefully will rule out any abnormalities of the airway. Doctor Bellas thought that maybe the cough was due to some reflex that would be treated by medication. We’ll let you know the results when we know.

Thanks for the support,
Paul, Katie and Mitchell

Monday, January 3, 2005 7:56 PM CST

Mitchell ripped out his feeding tube last night, and the doctors decided to leave it out. We’ll see how he does feeding on his own for the next couple of days. If he can continue to gain weight by just using the bottle, more power to him. This is the ultimate goal for the little guy to come home, so we are looking forward to his results. He had a second session with the ear doctor this morning and failed in both ears. We don’t know exactly what this means, but we’re pretty sure he’s not totally deaf. Mitchell does like his music, and Katie and I feel he recognize our voices when we talk to him. Maybe the results are due to the cleft, or maybe due to the syndrome. Either way, we hope he’ll be able to hear well enough to use hearing aids when he’s older.

His umbilical cord fell off so we were able to give him a bath tonight. You guessed it, he hated it. It was nice to see Mitchell with all of his cords and sensors off him. It was the first time since he was born that we could hold him without worrying about stepping on a wire. Still, it was difficult to listen to him struggle with the wash. We have gotten a little used to his complaining because we know that he can catch his breath when he needs to. With time, Katie and I are sure he’ll learn to be able to handle his baths.

Keeping clean,
Paul, Katie and Mitchell

Sunday, January 2, 2005 6:10 PM CST

We got some results from Mitchell’s hearing test. He passed in the left ear, but failed the right. The doctor said that this does not necessarily mean that he is deaf in the right ear. It may be due to the cleft palate or just how the eustachian tube is placed at this time. The audiologist will come and check him out sometime this week.

Mitchell is getting about 2/3 of his bottles completely finished by himself. Though Paul and I are very pleased with this, he needs to continue to improve daily or we will need to talk about putting a feeding tube in. We will revisit this possibility later this week with Mitchell’s doctors and nurses. It seems to have come down to “crunch time”. Mitchell seems to know this as he is trying very hard to get as much of his bottles down as possible.

We will also visit with the doctor later this week (maybe Wed.) about getting his hernia fixed, circumcision and getting his extra digit removed.

Paul will be going back to work tomorrow. I will continue the morning visits and will also try and be there for all of his feedings during the day. Paul will join me for the afternoon feeding after school.

The weekend was a pretty slow one due to the holidays. We will learn more tomorrow as there will be more hospital staff around.

We hope everyone had a great New Years Eve and Day. Thanks for the continuous thoughts and prayers.

Happy New Year,
Paul, Katie and Mitchell

Saturday, January 1, 2005 6:20 PM CST

Happy New Year!! Boy did I have a late night last night! I rung in the New Year with the new triplets that just moved in. (The girl triplet is kind of cute!) We listened to my Disney tunes and popped open a few bottles of milk! I was so excited for the new year that I finished both of my bottles on my own!! Mom and Dad came in this morning to feed me, but I was still sleeping soundly. I really tried to eat as much as I could for them, but I was just too tired from last night! I just felt like having Mom and Dad rock me! Tonight I almost finished my bottle for Mom and Dad. They were so proud of me! They also gave me a bath and I tried my hardest to like it. I only cried a little.

The OT asked me if I made any New Years resolution, I smiled at her. (Little does she know my resolution is to get out of this place!) These people are pretty nice, but I hear that Mom and Dad have my room all ready for me. Little by little I’m trying to eat more so I can go home. It is just so hard for me to stay awake after I’ve gotten my tummy partially full! (My cheeks also get tired)

I hope you had just as fun of a night as I did! Hopefully you aren’t as tired as I am today!
Happy New Year!

With Love,
Mitchell, Mom and Dad

Friday, December 31, 2004 7:43 PM CST

There isn’t a lot new to tell you today. Mitchell is improving on his feedings from the bottle and becoming more and more comfortable with being washed and changed. He is 7.3 pounds (.2 lbs above birth weight) today. Also, today his right eye was more dilated than his left, but that could have been part of the eye exam from yesterday. Other than that he seems to be progressing nicely. It was pretty slow in the NICU today due to the holiday weekend, so we may not know more about what the doctor’s plans are until Monday. My guess is that Mitchell will be there at least another week. We will continue to learn more each day.

It is a lot of fun reading your messages, they inspire us with all your love.

Happy New Year,
Paul, Katie and Mitchell

Thursday, December 30, 2004 9:57 PM CST

Mitchell is two weeks old today. More impressive is that we cannot yet see any affects of Trisomy 13 syndrome. We pray that he continues down that path. We’ve been so happy with how well the little guy is doing that it’s hard to see why he’s in the NICU some days.

Today Mitchell had his right eye checked for glaucoma again. He needed to be under a sedative in order to calm him for the procedure. The medicine tends to make him drowsy for the day, so it makes it hard to feed him through the bottle. Still that is the last big step he needs to take before going home. He actually did very well during his bottle feedings today! He can now consistently drink half of his bottle before gavashing(?) the rest through the tube to his stomach. He is also back up to birth weight. He’s growing and some day he’ll be big and strong like uncle Beckett. Our friends Jenny and Eric got to stop by the hospital tonight to say “hi” to Mitchell. They had their first baby, Max, in October and he’s already been writing to tell Mitchell about some fun pranks to pull on Mom and Dad. It is so fun to show off our little guy, and we’ll hopefully find out a little more about him tomorrow.

Love,
Paul, Katie and Mitchell

Wednesday, December 29, 2004 8:07 PM CST

“Super Star” is what the occupational therapist and nurse practitioner called Mitchell today. He had his suck, swallow test done and passed! They were very impressed with him! Paul and I were relieved to hear this being it means we can begin bottle feeding again. So, good news just keeps coming….I think the prayers are working! Thanks!!

Mitchell’s tooth came in completely today! The doctor was worried that he may swallow it, so he called in the oral surgeon. Only 13 days old and our son had his 1st tooth pulled! The doctor had us leave his bedside for this, which was a good thing. I can stomach a lot of things, but for some reason pulling teeth is not one of them! Mitchell got through it like a trooper though, barely even crying. They even let us keep the tooth for his scrapbook. Who would’ve guessed that we would already have to contact the Tooth Fairy!!

As to when Mitchell will come home, we are still unsure of that. Again, it depends on how well his feedings go. Hopefully he starts to gain weight soon, he is still a few grams shy of birth weight.

Paul and I cannot thank everyone enough for all of the support! Mitchell is so lucky to have all of you so interested in his life. We cannot wait to get him home so we can show our “super star” off even more.

With Love,
Katie, Paul and Mitchell

Tuesday, December 28, 2004 10:23 PM CST

They will not be able to do that eating/breathing test until to tomorrow some time. He will continue to get his food through the tube. Mitchell also has a tooth poking out; this has caused him some irritation when he tries to suck on the pacifier. I guess a few newborns to develop and early set of teeth. They tell us that it will become loose and fall out within a few weeks. They will probably pull it when it starts to loosen so there isn’t a chance to aspirate it into his lungs.

Uncle Jake got to hold got to hold him last night, and Mitchell truly love to be picked up and rocked. Jake and Lisa also got to witness one of his temper tantrums when he was getting his bath before supper. Although Mitchell’s oxygen levels dropped, he was able to pull out of it by himself. Today Katie and I changed his diaper after his noon feeding. He seems to tolerate it better on a full stomach. The staff worries that he will spit up food when he is changed and washed after a meal, but in his case it really seems to work. He hardly ever seems to fuss when his belly is full and his oxygen levels never fall to dangerous levels. I have sure learned a lot about babies in the last week-and-a-half. He is a lot of fun to take care of, but he wants everything to be done his way. Katie and I are beginning to learn what Mitchell is teaching us.

Tonight was a whole different story. We showed up and rocked him for a bit, which he always likes, but soon after he started to fuss. He is a little annoyed with his tooth and his lips have really started to chap. Mostly because he is unable to completely close his mouth due to his cleft. It was time to take his bath, which was very difficult for us tonight. He would not calm down, the oxygen was consistently running, which is hard for a father to deal with. I have an extremely hard time when Mitchell is unable to stay relaxed, but his mother does a great job of staying calm and on task. It was madhouse for about ten minutes getting him washed, changed, weighed, changed again, and inserted a new feed tube. We sat with him for a while to calm him down and then put him in his crib where he just started to fuss all over again. Katie picked him up, held him tight for a few more minutes before setting him down again. As we were packing up Mitchell opened his eyes for the first time tonight and followed Katie as she moved around the bed. It was the most wonderful thing I’ve ever seen. She held him again, and we know that for everything that he struggles with, love isn’t it.

We love you Mitchell,
Mom and Dad

Monday, December 27, 2004 9:22 PM CST

It’s been a long Christmas weekend. Katie and I used this afternoon to take a nap and pay some bills. Mitchell also seemed out of it this morning. He was not very interested in his bottle during the night or for us when we feed him at 9 o’clock. This will be the last big hurdle before we are able to bring the little guy home. He has been doing very well at breathing recently. He has not had to use the oxygen during the last two days we’ve been there. Tonight we watched the nurse give Mitchell a bath and he did not like that at all; must be a guy thing. He fussed the entire time and his oxygen levels dropped, but did a good job recovering in the end. We pray that his progress continues throughout the week. They will run a suck, swallow and breathe test on our son tomorrow to see if he is able to take in enough calories through the bottle. If he is unable to improve, then a possible solution is to insert a valve into his stomach from the outside. This way he would receive his nutrition without compromising his airway and at the same time allow his muscles to become stronger so he can take all of his food orally. We will let you know the results as soon as we do. We appreciate all the interest in our lives. We know we are blessed with love from all over.

Thank you,
Paul, Katie and Mitchell

Sunday, December 26, 2004 9:23 PM CST

Mitchell had another great day today. Last night he took 1.5 of the 2 oz. of milk from the bottle. This is the most he has taken so far! However, the doctor wants us to start using a bottle without such a big hole in the nipple. With the new nipple, Mitchell took about 2/3 oz. today. Paul and I think this is great being he was unable to get any from the bottle last week. Mitchell is also starting to use the bottle more often, 2 out of every 3 feedings. He also gained 100 grams today! He is only 100 grams short of his birth weight and he has become less dependant on oxygen when he gets upset.

It is nice to see Mitchell progress as he is. Paul and I think a lot of it is us getting used to what he likes. It was comforting for me to hear the nurse practitioner say that Mitchell is progressing as a baby with a cleft lip and pallet should. Mitchell was as alert as we’ve ever seen him. He was looking around, following voices, interacting with the people holding him. It was really fun to feel him squeeze your hand and even give us a little smile! (okay maybe it was gas….but just let me think he was smiling at us)

Mitchell enjoyed meeting his Auntie KT, Jeff, and PapaBear Cragg. (He had met Nana Trudy previously) They all enjoyed rocking him and you could tell he enjoyed it just as much! Auntie KT said she could rock and look at him forever! He loves to be rocked, so when you visit in a couple of weeks you will all have a job to do.

Love,
Paul, Katie and Mitchell

Saturday, December 25, 2004 7:51 PM CST

Merry Christmas! Jesus is here; well I think he’s always been here. I know that I’ve felt him with me from the start. He is in all the people that spend so much time at my crib side taking care of me. I’ve only been here just over a week, but Dad said that I’ve met more different health care professionals then he has in his life. They continue to bring good news, and I’m trying to stay awake for Mom when she feeds me, but she is just too comfortable. It’s just too easy to fall back to sleep. Besides I get too crabby when my pants are changed so I need a little nap time. I am looking forward to removing all these leads and tubes from my body so I can move as I want. In fact, it is already a lot easier to move without that IV. Now I just need to get rid of this feeding tube.

I’ve received so much attention and so many gifts from family members and people I haven’t even met. Mom and Dad have been reading me messages from my Moorhead buddy Max and my cousin Megan from Nevis. They sound like a lot of fun to play with and I can’t wait to meet them when I’m able to go home. Speaking of home, Mom tells me it’s been a zoo since I’ve arrived. Grandmas and Grandpas, friends and family, neighbors and students all interested to see how my parents are doing. I want to see what all the fuss is all about. Mom also tells me that there is a room already at home with my name on it. She has been working so hard at getting it ready for me, and there have been a lot of people stocking it with clothes that I can’t wait to mess up. I like all the bells and whistles that go along with the NICU so I hope it is a little crazy at home. If it isn’t, I have to make sure to cause a ruckus when I get there. I’m already a little mad that Mom and Dad decided to open Christmas gifts sent to me. They tell me they were all so nice and that they can’t wait until I get to play with or wear them. Next year I’m going to do my own gift opening, and I’m going to open theirs as well.

I moved over to the right side of the NICU today, I guess it’s where the graduates go just before they are ready to head home. Who knows, maybe I’ll ring in the New Year in my own room. I feel better today but I still have some growing up to do. There are a few more tests the doctors want to do and I need to learn to settle down and breathe before moving day. Take care..,and thanks for the well wishes, and I’ll make sure to bug you all when I break out of here.

Thank you,
Mitchell, Mom and Dad

Friday, December 24, 2004 7:56 PM CST

Not much new for Mitchell today. Grandma and Grandpa Miller got to spend the day with the little guy before they head back to Wisconsin Christmas morning. Grandma and Grandpa Cragg with Aunt Katie will be in town tomorrow and Sunday to say hello to Mitchell. He still has some trouble with feeding and breathing. He receives half of his meals by a gavash(?) tube and half of them by bottle. Most of the time he does well with the bottle, but usually has to finish his meal with the stomach tube. Katie and I have so much fun holding and rocking him, and he seems to enjoy that very much. In fact, the nursing staff likes to rock with him as well because the other babies are to young and small to remove from their cribs. The hospital staff has been so great with us. They enjoy learning about Mitchell along with us, and they have great patience and understanding when it comes to answering our questions. The NICU is decked out for the holidays and they have all the babies in Christmas clothes. We got some cute pictures of Mitch with a Santa hat, and it was nice to see all the upbeat cheer from the staff. They sure do make it easy for us to enjoy our son. We’ll know more tomorrow. Merry Christmas.

Thank you,
Paul, Katie and Mitchell

Thursday, December 23, 2004 9:54 PM CST

Thank you everyone for keeping track of Mitchell’s progress and our life for last week. Mitchell is one week old as of now. We are so proud of the progress he has made and look forward to what the next week has in store for our little guy. He does not like to be moved about, changed and washed. He will let you know this by the crunched forehead and forced crying. It can get scary sometimes when his oxygen saturation decreases, but maybe I notice it more because of all the monitors attached to him telling me how he is doing. The eye doctor examined Mitchell and found nothing wrong with the way his eyes are developing so far. This comes as a huge relief to Katie and myself. It is always reassuring to hear good news, and we have been blessed with great information in the last few days.

Thank you for your love,
Paul, Katie and Mitchell

Hello everyone. Grandma Deb here to tell you, not only are we so proud of Mitchell’s progress, but of his wonderful parents, as well. Katie and Paul are so patient with Mitchell, ask all the right questions of the doctors and nurses, take in all the answers and if they don’t understand talk it over until they do understand. What a lucky little guy, my buddy is!

Mitch is, as the one Dr. said, a “rare bird”. He is not a typical “trisomy 13 mosaic” child. The doctors are all watching him with wonder at the way he is eating and not loosing weight, the way he responds to different situations. He definitely knows when his momma and daddy are around. I like to think he knows when grandma is there, too..but I doubt it!

What a wonder a week can do in one’s life! I want to thank all of you as well, for the support, love, emails & notes on the web site. It truly has kept us going at times. May you all have a WONDERFUL Christmas and know that the Lord is with you all.

Thank you – Grandma Deb & Grandpa Dave

Wednesday, December 22, 2004 7:17 PM CST

Today was another good day for Mitchell, Paul and me. I started to learn how to feed Mitchell with his new bottle. This morning he needed a little bit of oxygen while feeding, but tonight he took almost the entire bottle (2oz) without needing oxygen! We are still unsure when Mitchell will come home. If he continues to do well with his feedings, hopefully he’ll be home by New Years.

Mayo test results came back positive for trisomy 13. He is partially affected by this syndrome with 30% of the cells in his body. This doesn’t really tell us a lot because the doctors are unable to determine what organ systems are affected by the trisomic cells. We will learn more as Mitchell grows and matures. However, we are very optimistic because Mitchell does everything a 6-day-old infant should do. It was a relief to see that Mitchell is now off the IV. It makes it easier to hold and cuddle him. Plus, this means he is getting all of the nutrition he needs from his feedings. Mayo Clinic tests also showed that Mitchell’s cells developed trisomy 13 on their own and is not due to traits passed on from Paul and me.

I am feeling better today than I have for a while. My blood pressure is still a little high, but I think it is due to stress. I go in for a check-up tomorrow…we’ll see if the doctor agrees. We see Mitchell for a few hours in the morning and evening, and rest in the middle. It is so fun to see how he changes every day!

I thank everyone for all of the love and support we have received! We have enjoyed reading all of the messages that we have received on the website. It is definitely comforting to know we are so loved.

Thank you,
Paul, Katie and Mitchell

Tuesday, December 21, 2004 5:47 PM CST

The more time we spend with Mitchell and the hospital staff the more we learn. I think we are learning to feed him the way that he prefers, but the little guy can still get very uptight about moving him around too much. He has a hard time breathing when he gets too fussy so still needs some oxygen to get through those tough times. Mitchell was very alert today for his grandmas and parents. It was nice to see him open his eyes and interact with us today. We had a second meeting with the plastic surgeon today to start setting up a schedule to repair his clefts. The clefts were a shock at first, but cause us little concern now. We are still waiting for results from Mayo about his chromosome tests. They should be in tomorrow, and we a very interested to have those results. From our understanding, there are not very many people with Mitchell’s trisomy 13 mosaic condition and the doctors are as interested as we in how Mitchell will develop throughout life. We are so pleased and relieved that Mitchell is doing everything a 5 day old should be able to do. We will know more tomorrow and everyday brings something new to hope for.

Katie and I appreciate very much the love and support we have received from family, friends, colleagues, neighbors, Trinity members and students. You are all so important to us and we are very blessed to have all of you in our lives. Mitchell is so lucky to have such a loving supportive community to grow up in. My mother and Katie’s mother now know why we would have a hard time even thinking of leaving Moorhead. It has been a great relief to the Grandmas to see all the impressive people we have the privilege to call our friends.

Thank you,
Paul, Katie and Mitchell

Monday, December 20, 2004 9:58 PM CST

This is a note from Nana Trudy. Today Mitchell is 4 days old and has already been subjected to more medical tests, pokes, and prods than any of us have...and more than any infant should be subjected to. He is a sweet little boy with a perfect body except for the clefts which take a moment to comprehend but soon become just a nusiance. Challenges continue to be eating , he sucks as much as he has energy for, and then they continue the rest of the formula by stomach tube.

Today Paul and Katie and Debbie, Katie's mom, and Trudy, Paul's mom were able to meet with the plastic surgeon for TWO hours. He reviewed with us the prevalence of clefts, and the sequence of surgical repair. His usual treatment plan is lip repair at 3 months, palate repair at 6 to 8 months. His clinic coordinates all the intervention from speech therapists, orthodontists, ears, nose and throat specialists etc. Tomorrow we go to his office for more instruction and to see pictures of repairs he has done.

As for the Trisomy 13 syndrome,. we will learn more Tues or Wed when the chromosome studies from Mayo are returned.

The surgeon is very impressed with the maturity Paul and Katie show. Mitchell is lucky to have such great parents.

Continue your love and support and prayers. More tomorrow. T

Monday, December 20, 2004 3:17 PM CST

Mitchell John Cragg is here!

Katie delivered a 7.1 pound, 19 inch boy, Mitchell John, three and a half weeks early. Katie was induced due do high blood pressure at 9:00 a.m. 12/16, but she did a great job and Mitchell arrived at 9:56 p.m. that night. Mitchell was born with a cleft lip and palate, which was a huge surprise to us and the hospital staff. The room became a flurry of action in a hurry to inspect the new little guy and to help him to breathe. They also found an extra growth on Mitchell’s left hand (it looks like an attached wood tick) that should fall of in due time. Because of those two conditions the doctor’s are worried about chromosomal disorders (syndromes). They have sent blood to Mayo to check for syndromes and hopefully we will have some results on Tuesday. Mitchell has had chest x-rays and ultrasounds for his head. The x-rays show that the heart is on the right side of his body instead of the left, but it is functioning normally, which is great news! The doctors say that his lungs and heart functions will be normal throughout his life. The ultrasound shows a little bleeding on the brain that is normal for pre-term babies, but is still something that we are concerned with. The next major step is to learn how to feed Mitch, which will be a challenge for all three of us. We will also meet with a plastic surgeon on Monday to talk about future facial surgeries, and to set up time lines for future consultations with an ear, nose and throat doctor.

As of Sunday morning we have found preliminary findings that Mitchell suffers from Trisomy 13 syndrome. This means that part of his chromosome #13 has been copied three times instead of the normal two. The symptoms that he exhibits are consistent with this finding. Good news is that it seems to be the mosaic form of the syndrome, which means it might not be as severe. There is a rush a Mayo to see just how severe the problem will be, and we’ll find more on Tuesday when his results are back. Katie has been troubled with high blood pressure, but it looks like she will be able to come home today. She looks forward to being in a more comfortable environment. It is tough for us that we will not be able to bring home our boy just yet. There are a few more things that the doctors need to find out about Mitchell before he can be released. Hopefully by Christmas!

Katie and I appreciate all the love and prayers we have gotten from family and friends. We learn a little more each day and hope that all the major surprises are behind us. We do pray that we will be ready for new information, and with the strength of our family and friends, we know we will be ready to confront the future. Pass this note on to all that are concerned. We will continue to keep everyone updated and feel free to call, write or stop in anytime. We will do our best to learn all we can, and if you have any suggestions or stories, feel free to let us know.

Love,
Paul, Katie and Mitchell

Monday, December 20, 2004 3:07 PM CST

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