History

Tuesday, August 9, 2011 11:34 PM CDT

As you can see, Eliah's biggest dream of getting to meet Ty Pennington came true tonight. Ty became Eliah's hero many years ago when he and his crew built a home for a little boy with brittle bones (like Eliah). Ever since that day, he has been Eliah's hero. For the last 5-6 years, we have tried so many different ways to contact Ty and for whatever reason, it didn't happen until just this week. God is good and His timing is perfect. Eliah went to bed a very happy little boy tonight...holding his photo as he went to sleep. :)

I just had to share.

Hugs,
Chelle

Tuesday, August 9, 2011 6:30 AM CDT

Gosh a lot has happened since I last updated. I wrote when we had to be in the hospital to get his old port taken out. They kept trying to convince me that he didn't need a line and were trying to talk me out of getting a new one placed. While we were there though they had to do 7 IV's because he kept blowing them. His veins are so tiny and thready that they are hard to even get an IV on him, and then when they get one, it won't hold. After the IV team having to work so hard on all of this, they said, "he definitely needs a new port". To which I just say DUH! Anyway, we went back in April for that and the placement was good. We don't really like where it is because it sticks out really far and we are afraid of it getting hit, so if Eliah plays anything where it might get hit, he will have to wear a chest protector. But accessing the port has been wonderful...easy access every time.

He is starting to have trouble sleeping again...about once a week he is unable to sleep and needs his meds. We have an appt in neurology today, so we will ask the doc about this.

Other than that, he has been doing pretty well. He talked to his GI about wanting his stomach removed. He says that he wanted to wait for them to make it better, but that he is done and just wants it gone. He started out by telling her, "I've got my own plan".

His brothers are having issues needing to be seen as well. Just briefly, Caleb has a lump in his left breast that needs to be seen. They have an appt scheduled for Sept. Noah also has an appt in Sept with Endo because he is not growing properly...his growth hormone is only at 20 and the normal range is between 50-100. I will have to update more on this later. Gotta go for now and get ready for Eliah's appt. I will try to be better about updates.

Thanks for always keeping him in your prayers.

Hugs,
Chelle

Sunday, February 20, 2011 4:28 PM CST

Hi. I am writing from the hospital. The bump in Eliah's road turned into a pothole. We came in on Monday of last week to get his port accessed to find out what was wrong with it and the radiologist told us that it is definately in need of replacement. He asked me how long we had the port and I told him 6.5 years. He was very surprised to hear that it had lasted so long, and even more surprised to find out that we had NEVER had a line infection. I think the main reason is because I have been very protective and a bit OCD about his port and won't let anyone else touch it. Except of course last Monday...I think his line was compromised during the access at the hospital. So we went home and went on about our day and scheduled an appt with the surgeon to discuss a new port.

The next day Eliah woke up and was playing and feeling fine...went and took a long bath. It was after this that he started with chills and when his nurse took his temp, it was at 101.8. Upon hearing this I knew that it had to be a line infection. I consulted with GI, Neurology (his mito doc), Nephrology (bone infusions) about this and they all agreed that we needed to be seen immediately in the ER. By the time we got there (me, nurse, and the three little kids) Eliah's temp had gone up to 102. Tylenol was given and an hour later it had risen again to 102.4. Ugh.

They decided to admit him to try and get a handle on things. His illness was puzzling, his white count was not high but blood tests showed many bands (showing that there was a bacterial infection). They also checked C-reactive protein (CRP) and normal numbers for this are less than 1 and Eliah's were 7...doc called that significantly high. They have had him on two strong, broad spectrum antibiotics since Tuesday and he will probably take them through tomorrow. We are hoping that we will get to go home on Tuesday or Wednesday.

Other than the multiple IV sticks, he is doing well and responding to the antibiotics well. His CRP numbers are coming down.

One last thing...do you remember that I asked you to pray for Kylee? She has been improving like crazy! God has done amazing things with her. We got to visit with her 3 times this week. Eliah has found an especially soft place in his heart for her.

I should go for now. Hugs!

Chelle

Friday, February 11, 2011 9:40 PM CST

Another couple of bumps in the road. But before I get to that, let me back up and tell you about the impedance study results. The results showed only 18 episodes of reflux in 24 hours, which is really good for Eliah. Six of those were acidic and 12 were non-acidic. These results are great, but don't help us to know why he had those 4 really bad days. The GI and I talked about the results and about the fact that the study was done about a week and a half to two weeks after those 4 days, and decided that we will just watch and wait to see what happens. If it re-occurs then we will go back in while it is happening and hopefully find out more then. Which leads me to this week...

Eliah started complaining about his stomach hurting on Tuesday night and about having a "horrible taste in his mouth". Next morning started with gagging and retching. For those who don't know or don't remember, he can not throw up because he had a nissen done, so his gagging and retching is the equivalent of throwing up. Then began fevers (high was 102.4) and intolerance to feeds. The fevers are now gone and everything else is back to his normal, but he is still having problems tolerating his feeds. He does fine on (homemade) Pedialyte, but whenever we try to add Pediasure to it, he starts gagging and retching again. We even had to turn his rate way back and still he couldn't tolerate it, so for now we are back on Pedialyte.

Another "bump" is that Eliah's port, which has been wonderful since it's placement so many years ago, has now clotted off, so we will be going in on Monday for them to put clot busting stuff in it to try and get it to open back up. Please, please, please pray that this works...the port is very important for Eliah's infusions etc.

While you are praying for him, please pray for a sweet little friend of ours named Kylee...she was in a terrible accident and has a long difficult road to recovery. Pray for God's grace for her and her family as well as His perfect healing for her.

We also have two dear friends that are battling cancer that need all the prayers they can get.

Thank you for your faithfulness to pray!

Love,
Chelle

Friday, January 21, 2011 12:56 AM CST

Eliah had the NG tube placed yesterday for the impedance study. Today he got it removed, so hopefully we will have results soon. Though his reflux symptoms are almost entirely gone now (from what we can tell), they say that it will measure things that we can't necessarily see. Worst case, we don't learn anything new. Best case, we get answers. Actually best case would be that everything is fine, but we would like to know why he had the problems. We'll see and when I learn more I will post it here.

Thank you for your prayers.

Hugs,
Chelle

Monday, January 17, 2011 11:20 PM CST

Quick update. After the appt in WCH we had a phone conversation with Dr. B about Eliah's current status and about his upper GI and visit with the primary. She and Dr. T (surgeon) had talked about what to do and (with the suggestion from Dr. F) thought that an impedance (sp) study would be a good idea. It would not only show what, if any, acid was refluxing, but also non-acidic stuff. The only problem with this (that worries everyone including Eliah) is that he would have to be off of all acid controlling meds for 72 hours. Eeek! He said, "I can't do that". Hopefully the benefits of test results will make it worth the ill side effects.

We also talked about possible ways of "making his stomach work" to empty (with a medical device), but again, our concern is that if something would make his stomach work enough to empty, then what would his intestines (that don't work well) do with all that they would be receiving? No one really has a good idea or feeling about this, but we are running out of options. Eliah said to Dr. B during our last visit, "no one should have to live like this" which propelled her to find other ways of doing stuff with him. It is really coming down to a quality of life issue. It has been for a while, but now one that Eliah is speaking out about.

The "reflux" has seemed to settle down some with episodes coming less frequently, but still happening. We are unsure of what caused it in the first place as well as what would have made it settle back down (seeing as nothing ever changes with his feeds/meds).

Thank you so much for your continued thoughts and prayers.

Hugs,
Chelle

Wednesday, January 12, 2011 12:34 AM CST

We made the snowy trip to Wash. CH today for the kids combined appt.

Caleb is right around the 50th percentile on everything and is nearing the end of his growing period. Weight wise and everything else, he is doing GREAT!

Eliah checked out okay too. I told Dr. F. about the "reflux" stuff that has been going on and she said that from his discriptions, it does sound like classic reflux symptoms. I told her about the test showing that no barium was going past the nissen, and then she suggested that with the consistency of the barium being different from the consistency of the stomach fluids there might be a small fistula. She suggested a pH probe to see things that might not be as visible with the upper GI. I plan on getting an appt with the surgeon to at least do a face to face and talk about things...maybe push for more testing. It's not that I am trying to find something wrong, but something is clearly different (and sudden) than it has been for the past 4 years and we need to know what it is and what can be done about it.

Julie has been having what we thought were "blood sugar" problems for years, but has fairly normal numbers. What we found out today is that her body has an intolerance to sugar and that we need to really watch (closely) how much she is getting. She was also Rx'd a med that will help her with her nausea.

Noah checked out okay...he is still not growing properly...very short stature, big head, other possible growth issues but is developmentally on target and the doctor said that he has more words than other kids his age. I interpret that as BRILLIANT! :) Sorry...just had to throw my opinion in there.

So, recap...overall everyone was healthy with a few little weirdnesses.

The trip down was fine, but the trip back was bad (snow drifting). I lost control of the van twice, the first time not so bad and the second time all over the road, but God was gracious and kept us all safe. After that, there was a delightful "person that God created that made a really poor decision" (not quite the words I used to describe them when it was happening) that decided to drive around 5-6 cars, into my lane (oncoming traffic) and had I not come to almost a complete stop, they would have hit us head on. As it was, there was only about 2 car lengths between us and the other traffic when they dove through. Ugh!

Back home...safe and sound. I'm done driving for the winter. :)

Love,
Chelle

Tuesday, January 11, 2011 3:58 PM CST

Okay...here's the lowdown on Eliah. From what I and the radiologist could see, he is not officially refluxing. Though as soon as he injected the barium into his stomach Eliah tasted it. Things that make you go hummm. He had Eliah take a little by mouth to see how it went down and the lower third of his esophagus is useless. It wouldn't empty. So, he rolled him back and forth numerous times and tipped the table until he finally got it to mostly empty.

While we are THRILLED that he doesn't appear to be refluxing we are puzzled by the whatever episodes ARE happening that are causing his throat to burn and him to taste nasties in his mouth. My only guess is that maybe the gases are escaping up there?? Who knows. But he also said that the taste that he gets in his mouth tastes "like when you put your finger in your ear and then in your mouth" (to which mom starts gagging at the thought of it). Kids are so gross. :)

The radiologist will be re-interpreting the results and calling Dr. T with them and then we will hear back from him. I just want to know what is going on, but in the mean time, I am relishing that we still get to stay home.

I will update as I find out more. Thank you so much for your faithfulness to pray.

Hugs,
Chelle

Monday, January 10, 2011 8:52 PM CST

We will be going for an upper GI tomorrow at 2:15pm, so barring any problems traveling through the snow storm that we are supposed to get, we should know more after that. They did say that since the test is not being done at the hospital main campus (too busy to get him in right away) that it will be Wednesday probably before they have results to our surgeon. I will post as soon as I know anything.

Thank you so much for your prayers and for checking in with us.

Hugs,
Chelle

Monday, January 10, 2011 6:35 AM CST

I'm sorry that I haven't updated, for those of you who still come to see what is going on, but I am thrilled that the need to update has not been there. Things have been so stable for Eliah for such a long time. It has allowed time for other needs to be met that wouldn't have been able to. As you know, Noah was born and then shortly afterwards Scott was in a bicycling accident and had to have shoulder surgery. He recovered and then I had to get both of my hips replaced. That brings us to now...when Eliah is starting to "act up" again and do the "medical kid thing".

Last night he came to me and said that his throat was burning, and then continued to tell me each time that it would happen after that...probably 20-30 times in about 20 minutes...not a good thing...this means that he is refluxing again and that the nissen/fundo is probably compromised. I am so hoping that this is not the beginning of a downward trend for him. Mito (for family and friends who aren't as familiar with it as the medical moms) is like that...things can go along fine for a while and then something causes it to kick back in and things can go south really quick. We are hoping that this is just a small hiccup or blip along the way and that things improve. Needless to say, I will be better about getting on here to let folks know what is going on.

Thank you for checking in on him.

Hugs,
Chelle

Friday, October 2, 2009 10:58 PM CDT

I just looked and realized that I haven't updated since June. Life has been a whirlwind. Eliah has been stable and doing quite well. Even his belly has been doing somewhat better as we got a new kind of disk to put under his ostomy bag and it seems to stick better than the old kind and creates a better environment for healing. He still has bad skin breakdown, but it is now limited to about a 1 inch circle (around his stoma) where it used to be 4 inches, so we are thrilled with the progress.

Eliah and Julie started another year of homeschool and so far they are both doing wonderfully. Much of the work is done orally this year and this seems to be working much better than all of the written work I made them do last year. Obviously the written part has to come into play as well, and will shortly, but I wanted to set the tone of the new year on a positive note.

Baby news...Eliah has his new little brother Noah and he LOVES him. Everyone does. Noah Robert Michael Smith was born on the 29th of July at 5:45pm via emergency c-section. He wasn't tolerating labor well and his heartrate had dropped down into the 40's for a while and that was not a good thing, so they decided to take him. He was healthy and strong...just didn't like labor.

We stayed for only 2 days and then returned home. We were home for about a week or two when, on his way home from work, Scott was in a bicycle accident and broke his arm. He had to have surgery (where he received a plate and 10 screws) to repair it, so neither of us were able to lift much of anything for a long time. I have lifting priviledges back...Scott still doesn't but is recovering well.

We are coming up already on the one year anniversary of Hope's death. In some ways it is so hard to believe that it can have already been a year...it seems like it was only a few weeks ago, but in other ways it seems like we have been missing and grieving her forever. The 18th of October is not only her angelversary, but the date for Noah's dedication to the Lord at our church.

I am going to close for now, but I ask for you to please remember my uncle and mother in your prayers. Both are having hip issues...my uncle had a stroke about a year ago and just recently fell and broke his hip...he will need either surgery to repair or replace his hip. My mom had a hip replacement in 2000 and will need another one this year as well. Her hip was re-injured in a hit and run accident about a year ago and now is infected.

Hugs,
Chelle

Wednesday, June 17, 2009 6:11 AM CDT

If anyone still even comes to this page to check for updates, I have to apologize for not being more diligent in updating it, but I also have to say that I have tried over the last 3 months to update on at least 3 or 4 different occasions. At first, when Caringbridge changed their system, I couldn't figure out how to update. Then once I figured that part out, I updated and lost all of my work. And then again, I updated, couldn't finish it, saved it to another file and just discovered again this morning that the file got lost. All of that just to explain that I am going to try and get back on the ball and put updates here more often, and to say that I am so sorry for not being better about it.

The good news is that we can now say officially that Eliah has not been hospitalized for 2 years. He has had numerous visits to all of the various depts that he usually goes to and some new ones, and still has all of the same stuff going on, but nothing that has made him have to stay at the "Mooberry Hilton" and for that we are THRILLED!!

There has actually been a lot going on with Eliah...first of all he turned 9 last month and just seems to be growing up so much lately in so many different ways. He is playing on the miracle league again and loving it. His team name is Eliah "the Bulldozer" Smith. :o)

Medically he is holding his own. His motility seems to be worse as his j-tube backs up more than it used to (formula comes out rather than going in...wrong direction) and he is having a harder time with BM's lately. Thankfully we can increase his Miralax to help with the BM's, but as far as the intestinal motility, he is maxed out on Cisapride for now. Once he gains a little more weight, we will be able to increase that some and hopefully see some difference there too. I'll have to let you know about that.

He has been having incontinence issues (both bowel and bladder) for pretty much his whole life. He had 2 months where he seemed to "get it" and then he went back to having issues so we had some testing done recently to try and figure out why. Initially we thought that maybe he just didn't want to be bothered with stopping what he was doing, but then had reason to believe that it might be medical. They did tests on his urine to see if maybe there was an infection and all came back good there. Next they did a VCUG which is an emptying study to see if he could empty completely, and he did. Next will be one of two tests, either a pressure test (not sure of the official name) or an MRI. The pressure test would basically show whether or not he is having spasms in his bladder causing the issues we have noticed. The MRI would be done to see if he has something called a "tethered cord". Tethered cord is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. It is a progressive disorder. The symtoms that we have noticed from him are mainly incontinence (bowel and bladder), but also occasionally he has lower back pain that can also be associated with it. His sensory issues can also be one of the things associated with it. The information that I have read says that it is a neural tube defect during fetal development which would make sense because of all of the problems he had in utero. It would just be nice to find out what is causing the bladder/bowel issues...I don't want to be upset with him over being wet if it is something that he doesn't have control over, but I also don't want him to be lazy and just not wanting to stop what he is doing to go potty...so finding out would be most helpful.

His belly has still been a mess. Just the other day, after his shower, I started to get excited because the skin actually looked like it might be healing and then an hour or two later it was a bloodier mess than I have ever seen on him before. Ugh! The "possible options" that I talked about in my March update, that GI was considering for helping Eliah's belly are as follows (and the reasons that we are not doing them right now). One option was removing his stomach (talked about a long time ago)...the pros with this would be that he would be getting rid of something that does nothing but cause him problems...he doesn't use his stomach for food because it doesn't work to process food anymore...all it does is leak and burn his skin and produce too much acid. With his stomach gone, he would never have reflux again which would take away his aspiration risks altogether and spare his esophagus from further damage (should his nissen come lose). The biggest reason that GI doesn't want to do this is that it would be a pretty big surgery and Eliah has shown time and time again that he doesn't do surgery well (it's a mito thing). It usually ends up causing more issues than what it fixes. Plus, they are still holding onto the hope that someday "they" will come up with something that might work for him and once the stomach is gone, you can't put it back. So, the next option is a gastric pacemaker. This would essentially cause the stomach muscles to "squeeze" like they should be doing anyway (his don't) and cause the stomach to empty into the intestines and possibly even process some food. The concern with this is that, with his intestines already struggling to work enough to handle the formula that they are getting, what new problmes would adding more to that cause? They don't currently have a pacer that would work for the intestines. So we are back to pretty much doing like we have been...just treating symptoms and dealing with each day as it comes. He is about as used to it as anyone could be (he is such a trooper), but his belly hurts him pretty much all of the time and he spends most/much of the day holding it while he plays. This is hard to watch, but just something that is part of our life.

We had the neuropsycological testing done and though we didn't really find too many answers as to why he has had so many neurological losses throughout his life and had to work so hard to regain lost "ground", we got some different strategies for helping him cope with his learning difficulties. So far this school year, he has done better than last year, but we are still working to finish so that he can move on to the next grade.

THE MAKE-A-WISH TRIP...it was truly the experience of a lifetime! We met so many kind people and had so many different experiences. It was nice to have time away from home and away from our "routine" and take it somewhere else. The kids were thrilled with the limo ride, airplane trip to and from Give Kids The World, our villa, the parks, swimming pool, everything. It's hard to say what Eliah liked the most, but I'd have to say that the Amberville train station rated pretty high...this had remote control boats that you could drive from inside the building (so the weather and heat wasn't a problem for him), there was a dino-putt course that you could play anytime, there were model trains inside that you could push buttons to change day/night and move various parts of the "village" (HE LOVED THIS) and of course the train that he could ride any time of the day that went around the train station. There is a webpage where you can see pictures from each of the days we spent there, as well as pictures of the going away and welcome home parties that were held in his/our honor by both the Franklin Twp. Fire Dept. and Battelle Memorial institute. The address is:

http://216.136.50.63/EliahSmithMAW/

I don't know how to make that a clickable link. Sorry about that.

Quick update on Eliah's newest little sibling...the current due date for Noah is the 23rd of July. I go for appts next week to do an ultrasound to check amniotic fluid levels, as they have been running a little high, and then I also have an appt with the doc to see where/how things are going. I will try to update next week regarding this.

Please, please pray for Taylor...she is really struggling. In short she has been vented for a number of weeks and now (at least temporarily) has a trach. We also have another friend (a mother of 2 small children) that just found out that she has malignant melanoma (sp)...she doesn't know much about how bad it is yet, but is obviously frightened. Please pray for God's grace and peace in this and His healing for her.

Love,
Chelle

Wednesday, March 4, 2009 1:45 PM CST

We tried to find shamrocks for our background, but couldn't figure out how to do it. So we just have green.

It has been exactly one month since I last wrote and my how a month's time can change things. So much has happened. We found out on the 9th of February that we are expecting again. This was a huge shock to us because of some circumstances surrounding things that *shouldn't* have made it possible...we thought. I won't get into all of that, but obviously it was a HUGE surprise. I did a home test and when it showed up positive I was more scared and surprised than I was excited about it. Mainly because of losing sweet little Hope not so long before and fearing (because of not knowing why) that it would happen again. I called the doctor right away and asked if I could come in "right now". They had me come in about 3 hours later for a blood test to see what my quants were and they came back the next day at 64,618! That was great. With those numbers it meant two things...that I was definitely pregnant and that there was a possibility that I could be further along. I was scheduled to come in for an ultrasound on the 17th of February. When Scott and I went in for the ultrasound we got another shock...the doctor was using one kind of machine and had to switch to the other "because the baby was measuring further along than we all thought". When she measured the baby it measured at 16 wks!! God, in his mercy, carried me through the first (and most frightening) trimester without me even knowing that I was pregnant so that I wouldn't worry and fear the whole time. It was and still is amazing. So then today we went again for another ultrasound (level II) and saw that not only is the baby healthy and all of the measurements are perfect, but we found out that we are having another little boy. The little kids are thrilled. At first we wondered if Julie might be upset to not be getting a sister, but she is just thrilled to get a baby to hold and not have to give back like Hope.

Eliah has been doing well medically lately except for the traditional belly problems. We have been talking with GI about what to do and we are all puzzled as to how to change things because it seems that we have tried everything. There are a few options but right now we are just kind of waiting to see which will be the best. Now for the good news...Eliah's Make A Wish (MAW) trip is coming up next week!! We will be going to Disney in Florida. Finally...warm weather. He had his MAW party with his favorite people in the whole wide world...the firefighters (Chas and the guys). He had the time of his life running the lights and sirens and just "hanging out" with the guys. They got a run while we were there and were out of there in a flash, but Eliah got to see them "gear up" and that was exicting. When we got back from the firehouse, we walked into our house and it was filled with the smell of gas. As we checked around we saw that the stove had gotten bumped and obviously didn't light so it was on for the whole 2 hours that we were gone. THANKFULLY the house that they had the run to (while we were at the firehouse) wasn't ours! We aired out the house and everything was fine, but it was kind of scary for a minute.

Something else that we have been doing (medically) is that we have been having Eliah evaluated through the neuropsychology dept at Children's. The reason is to try and figure out why he has had so many memory problems and to help him work through them as well as find new ways to either help him learn or help him remember things differently/better. The testing is grueling, so please pray that they will be merciful and that God will make him patient and strong. He also seems to be showing more frustration with his life being so "medical" and has been acting out more, so this has been a daily battle to try and keep him responding appropriately to "frustrations".

On a very sad note...the sweet lady Carolyn that I talked about (who we ordered Eliah's wetsuits through) passed away about a week ago. Please continue to pray for her dear husband as he not only grieves the death of his wife, but as he tries to deal with all of her business stuff in his sadness. She had a large client base and he is having to redirect them to other companies now. Eliah did receive his wetsuit from Carolyn's seamstress in California and it fits him perfectly, so he is all ready for his trip to Disney and is excited to swim.

That is it for now. I will update definitely after we get back and will post photos. Eliah's grandparents got together to help purchase his wetsuit and a camera for us so that we would have them for his trip and to help capture as many precious memories as possible. This will help him remember everything so much better (in reference to his memory issues).

Please continue to keep Taylor in your prayers...she is back in the hospital and not feeling very well lately.

Hugs,
Chelle

Wednesday, February 4, 2009 10:03 AM CST

I am writing today to ask you to pray for a sweet lady that has become very dear to us over the past 2 years. Her name is Carolyn and we met her when we ordered Eliah's first wetsuit. She custom made a wet suit for him so that he could go to Ocean City for his Believe in Tomorrow trip. We knew at the time that she was recovering from cancer. She said that when Eliah outgrew the suit that she would make another one for him. It took him a while to grow out of the old one, but in preparing for his Make A Wish trip the need has arisen again. I called about 2 weeks ago, and reached Carolyn at the hospital...her cancer had come back and she was undergoing treatments. She said to call her back later to place our order. Over the last 2 weeks I have tried to reach her and have been unable to...all the time worrying about what this meant for her. Today I reached her husband and he told me that she was so weak and sick that she may not be able to continue the buisness. My heart breaks as she is one of the sweetest people you would ever meet and would do anything for anyone. Especially having been sick herself, she understands how important things like wetsuits are to kids like Eliah.

Please, please, please pray for her and her dear husband as they battle this horrible disease again. Pray for her strength and comfort and for God's grace to carry her husband.

Thank you.

Hugs,
Chelle

Wednesday, January 28, 2009 10:45 PM CST

I am sorry...it has been such a long time since I updated. There has been so much going on lately. The holidays went well and Eliah's health has been stable for such a long time now. This is SUCH a blessing. He still has daily issues with his leaky and often bloody belly, but otherwise has been well. His infusion in December went on without any glitches. He had 1-2 days about a week after his infusion where he spiked a fever of 101-102...I consulted the doctor, but that was all that happened, so we were able to avoid the hospital.

The rest of our family have had various things going on. I was sick for about 6 weeks with a number of different things going on, but am doing better now. One of the last things I had to deal with was a tooth extraction, bone graft, and bone infection. It was pretty scary, but I am getting better. Julie had some issues with her blood sugar and had to do daily blood glucose monitoring for a while, but for now things seem to have resolved. Caleb has had various things going on...some good some bad, but he is doing well. Just yesterday he received a passing score on a test at CAP to be promoted to Chief Master Sergent. This has been something that he has been trying for for a while and is THRILLED!! We all are. Melody and Tim got married in December. This is something that (timing wise) we were not thrilled with to say the least. So she is obviously no longer living at home, but with Tim. They seem to be doing alright and are on a long road of life lessons where they will learn to depend on God. Please pray that they look to Him daily and that they follow His guidance (and ours).

We still think about and miss Hope daily. The kids talk about her much of the time. Just yesterday they were asking how big she would be if she had stayed. We found week-to-week gestational pictures of how big she would have been. It's hard to believe that she has been gone for so long now and even harder to realize how lively she would have been at this point.

Scott has been doing well. Trudging to work in the snow and ice. Boy was it crazy today. Please pray that work will continue to be stable for him in this unstable economy. So far, so good.

We are preparing to go on Eliah's Make A Wish trip to Disney soon...we leave in a little less than 6 weeks now. Eeek, we have a lot to do to prepare. He is SO excited...we all are.

That is it for now. I will try to be better about updates. Please pray for our friends who are struggling with health issues (Stephen and Taylor specifically), and for all of our friends whose children have gone to heaven before them.

Love,
Chelle

Thursday, December 25, 2008 6:17 AM CST

I am dreadfully sorry to have been so long between updates. The good news is that things have been relatively calm with Eliah's health (with the usual exception of his belly). The other news is that we have been just so busy with life that I haven't taken the time to update his page. We are still missing baby Hope and carry her with us every single day. Some days are harder than others. Still many tears.

I will try to update after today and share some about Eliah's (and everyone else's) Christmas.

Until then, please have a very safe, happy, and healthy holiday as we celebrate the birth of Jesus and the upcoming new year.

Love,
Chelle

Sunday, October 26, 2008 7:30 AM CDT

Hi. I wanted to update about a few things. First, this is Eliah's page and I need to set the focus back on him and his needs. Thankfully things with him have been relatively calm during this time. He has had some pretty awful drainage coming from his stomach again (yellow, green, and blood) and there doesn't seem to be much rhyme or reason as to why. His belly burns pretty much all the time, but the gastric pH comes back as normal, so in theory it is not acid, but what else could it be? We don't know and no one else seems to either, so for now (and quite a while) we just treat symptoms and take lots of soaking baths. Every once in a rare while he will have a good day where it isn't burning as much and the skin looks better, but then by the next ostomy bag/wafer change it is a mess again. ???

His and Julie's school is coming along nicely. They are both learning a lot and learning how to spell well enough that we are having to speed spell entire conversations to try and keep them from knowing what we are saying. :o) Even then, they (Julie especially) will pick out enough words to usually figure out the gist of the discussion. Sometimes if Eliah can't keep up, he will tell Julie, "Tell me what they're saying??".

The rest of the family...Melody turned 18. I can't believe that she is actually an adult now. The time goes along much too quickly. We are learning how to parent an adult by coming along side and "guiding" her decisions rather than making them for her. It's hard letting go. She is struggling with gaining her independence while still living with family/house rules. She doesn't want them to still apply to her, but is realizing that they do.

Caleb is doing well in his new school...meeting lots of new friends and learning a lot about deadlines. He waivers between liking the freedom of doing "his own thing" and wanting the security of home. I guess that's just normal for a teen though...wanting to be all grown up some of the time and wanting the safety of being able to lean on mom and dad the other times.

Scott and I are doing alright. Rushing around, keeping things going around home (and work for him). Learning to balance grief and joy at the same time. The grieving is long, slow, and hard. But the joy is all around us too with the other kids. We have so many blessings!

Please remember the family's that are still awaiting transplants that we have mentioned before...Taylor right now is really struggling with some bleeding issues and could use some "trumped up" prayers. There are also so many families that we know that have lost children and are
still trying to survive their losses. So please, continue to remember them.

I wanted to share something here that I shared with some through email...it is a journal page telling of how we came to the baby's name. That will be the last of this page for today.

..Today I was crying on the way to my doctor's appt to do an ultrasound showing whether or not the miscarriage had been complete. I was crying because it was just another horrible step in grieving the loss of our precious baby. The first was learning that there was no heartbeat. Still I remained hopeful that the doctor could possibly be wrong...that the first ultrasound was just done too early and that things might still be okay. The second thing that happened, in the series of horrible days was when I began cramping, because that was the beginning of the end of things and I knew it, but still wanted to believe that it wouldn't be so. Then the third...the bleeding started...the 4th, when I began going through labor, and what I thought at the time was the last (the 5th) in this long line of events, but truly the most gut wrenching day of my life...when the amniotic sac came out intact with our precious, little, tiny baby still safely inside. Our baby that we weren't "supposed" to be able to have...but God allowed it.

So back to today...on my way to the doctors...as I was crying, I began praying and wondering about what to name the baby...since we didn't know if it was a boy or a girl, then my mind went back to a teaching I heard many years ago, that during fetal development in the very early stages, all babies begin as girls...it isn't until later that the ones that are to be boys realize that blessing. So at the stage that this baby died, she was a girl. So then I started thinking and praying for God to give us a name and I thought about naming the baby after a character quality of God...Grace, Joy, etc. At this point, my mind went to 1 Corinthians in the scriptures where it talks about faith, hope, and love...the name Hope stood out to me...then my mind went back to the bracelet that I wore during the entire pregnancy that my dear friend Cindi and her son Jeffery got for me when they were at St. Judes because of Jeffery's cancer. This was one of the last things that they got together and they wanted me to have. The bracelet says "hope". At this point I was out of the van and walking toward Scott. We hugged and I told him, "I think I know what we are supposed to name the baby." He asked and I told him, "Hope". He smiled and I asked him why...he said that the name Hope was the one that he had been thinking of all along and that he was just waiting to see what I would come up with. At that point I knew (as did he) that this was her name. After the appt, as we were checking out at the desk, they had a basket of pink (breast cancer awareness) bracelets...the first one that I saw said, "hope". I bought it.

When I got home from the appt, I was talking to Lisa (cousin/nurse) and telling her about me thinking about a name for the baby, on the way to the appt, and how my thought process was going, and as soon as I mentioned Corinthians, she said "Hope", "her name should be Hope". I told her about Scott coming to the same conclusion. It truly was a God moment. Then after we talked a little while I remembered what my dear neighbor (Chantal) had told me right after we found out that there was no heartbeat (early in Oct)...she told me, "remember not to grieve as one who has no hope."

So obviously God in His own special way not only named our little girl, but was so sweet in how he showed it to each of us, what her name should be. She is our Hope for the future, our hope based on faith in our Heavenly Father.

Wednesday, October 8, 2008 6:26 AM CDT

(There is an update near the bottom of the page...the date is 18 October, 2008. I wanted to leave the older update up for some that have not read it yet.)

Yesterday we went to the first baby appt to get the ultrasound done and figure out dates. We were able to see the baby on the screen, but there was no heartbeat. As measurements showed, the baby died around 6.5 wks gestation. We will be having a repeat ultrasound in a week or two to confirm, but the doctor doesn't think the results will be any different.

I can't even describe the pain right now. I know that God had His purposes in it though. The scriptures say that "the Lord gives, and the Lord takes away"...He did give, but for whatever reason He also saw fit to take the baby home so very, very soon. I feel that if He had to take it, He did it in the most gracious way possible, by not letting me go closer to term, or not letting it die after it was born, but it is still so hard.

We have a memory garden in our back yard where we have put things to remember our friends and loved ones who have passed away...I am thinking about picking a gender neutral name for the baby and getting something to remember it by. Julie was asking if she would be able to hold the baby before we buried it...she just doesn't understand. I told her that it would be too little to hold and that we wouldn't be burying it, so I think that having a "grave/memory marker" in our garden would be the next best step.

The little kids are taking it pretty hard and are talking about it a lot. Their processing is so vastly different from ours. I just want to cry and sleep. They are a good motivation for me to keep on doing what I know I need to. The big kids are supportive, protective, and understanding, but are not saying much. Caleb was trying to keep the little ones from asking so many questions last night, but I explained to him that they need to talk about it and ask questions to process it in their minds.

On Sunday, at church, we sang a song during worship that says what I believe about this all...the words are below.

"...Blessed be your name when the sun's shining down on me,
When the world's all as it should be, blessed be your name.

Blessed be your name on the road marked with suffering,
Though there's pain in the offering, blessed be your name.

You give and take away, you give and take away, My heart will choose to say, Lord blessed be your name.

Every blessing you pour out I'll turn back to praise.
When the darkness close in, still I will say,
Blessed be the name of the Lord, blessed be your name.
Blessed be the name of the Lord, blessed be your glorious name."

Please just keep our family in your prayers as this is such a difficult change from what we expected would be happening right now. We are praising God for His great will and purpose, as we ask for understanding, but our prayers are offered up with many tears.

Thank you!

Love,
Chelle and all the Smith's

---------------------------------------

18 October, 2008

I have been cramping for the last 3 days, bleeding for the last 2, and then today I started having labor pains and along with numerous clots, I delivered the amniotic sac still fully intact with the baby inside. Scott and I had to open the sac to find the baby. We could identify the head, the back, the little tiny arm buds...the bottom still looks like a mermaid, but at least we saw the little angel, got to hold it for a second, and will be able to give it the dignity of a burial rather than having it thrown in a trash can as would have happened if I had gone through a d/c. Not quite what I expected or desired to happen, but at least now we know what has happened and we have closure. We will be burying the baby at my mothers house.

Thank you for your continued prayers.

Sunday, September 21, 2008 4:13 PM CDT

Hi...here we are more than halfway through September and I am just now updating. This month has been buzzing (and at times blowing) by quickly with school starting for everyone. Melody is completing her senior year in the public high school and has been doing well. Caleb started for the first time at a charter school and loves it. The school seems like a good cross between homeschool and public school. They have classes M, W, F and they do experiencial learning or internships on T, TH. Both of the little kids are homeschooling again this year and so far, things are going well with it. Julie loves learning and is very eager. Eliah is not quite as excited about it...he would rather play. He does get thrilled with himself though when he learns something new, so I am hoping that as he continues, he will like it more.

My little reference to things blowing by, of course, was because of hurricane Ike's effect here in Ohio. We lost power for only 28.5 hours, which is relatively short compared to some, but our main concern was powering Eliah's feeding pump and keeping his meds cold (along with our other food). We ended up plugging him into a car battery using some sort of converter that Scott has here and then plugged the pump into that. It worked well. It's helpful to be married to a man with a lot of goofy little gadgets...they got us through. :o) As far as keeping meds and food cold...we were some of the hundreds of people that stood outside of Capitol City Ice and ended up buying 6 bags which saved both the food and meds from spoiling.

Eliah and Henry are doing well together. Henry is getting better all the time with pump alarms and alerts us most of the time. He is also really good at finding Eliah when they play hide and seek...working on his tracking skills. When he is wearing his harness and realizes that he is "working" he will lay under the table or with Eliah while he does his school and is just wonderful. But when the harness comes off, he just goes back to his goofy ol' self.

Medically, Eliah is still about where he was last month. There have been some memory issues, but not major ones. I think the constant attn being given in therapy and during homeschool is helping some.

News at the Smith house...God has decided to bless our family again with another baby. My first appt is the 7th of October, so we should know more then about due dates and such. Eliah and Julie are very excited and the teenagers are as excited as teenagers can be. More unsure of what to expect, but they are supportive, so that is positive.

Hugs,
Chelle

Sunday, September 21, 2008 4:13 PM CDT

Hi...here we are more than halfway through September and I am just now updating. This month has been buzzing (and at times blowing) by quickly with school starting for everyone. Melody is completing her senior year in the public high school and has been doing well. Caleb started for the first time at a charter school and loves it. The school seems like a good cross between homeschool and public school. They have classes M, W, F and they do experiencial learning or internships on T, TH. Both of the little kids are homeschooling again this year and so far, things are going well with it. Julie loves learning and is very eager. Eliah is not quite as excited about it...he would rather play. He does get thrilled with himself though when he learns something new, so I am hoping that as he continues, he will like it more.

He and Henry are doing well together. Henry is getting better all the time with pump alarms and alerts us most of the time. He is also really good at finding Eliah when they play hide and seek...working on his tracking skills. When he is wearing his harness and realizes that he is "working" he will lay under the table or with Eliah while he does his school and is just wonderful. But when the harness comes off, he just goes back to his goofy ol' self.

Medically, Eliah is still about where he was last month. There have been some memory issues, but not major ones. I think the constant attn being given in therapy and during homeschool is helping some.

News at the Smith house...God has decided to bless our family again with another baby. My first appt is the 7th of October, so we should know more then about due dates and such. Eliah and Julie are very excited and the teenagers are as excited as teenagers can be. More unsure of what to expect, but they are supportive, so that is positive.

Hugs,
Chelle

Sunday, September 21, 2008 3:57 PM CDT

Hi...here we are more than halfway through September and I am just now updating. This month has been buzzing (and at times blowing) by quickly with school starting for everyone. Melody is completing her senior year in the public high school and has been doing well. Caleb started for the first time at a charter school and loves it. The school seems like a good cross between homeschool and public school. They have classes M, W, F and they do experiencial learning or internships on T, TH. Both of the little kids are homeschooling again this year and so far, things are going well with it. Julie loves learning and is very eager. Eliah is not quite as excited about it...he would rather play. He does get thrilled with himself though when he learns something new, so I am hoping that as he continues, he will like it more.

He and Henry are doing well together. Henry is getting better all the time with pump alarms and alerts us most of the time. He is also really good at finding Eliah when they play hide and seek...working on his tracking skills. When he is wearing his harness and realizes that he is "working" he will lay under the table or with Eliah while he does his school and is just wonderful. But when the harness comes off, he just goes back to his goofy ol' self.

Medically, Eliah is still about where he was last month. There have been some memory issues, but not major ones. I think the constant attn being given in therapy and during homeschool is helping some.

News at the Smith house...God has decided to bless our family again with another baby. My first appt is the 7th of October, so we should know more then about due dates and such. Eliah and Julie are very excited and the teenagers are as excited as teenagers can be. More unsure of what to expect, but they are supportive, so that is positive.

Hugs,
Chelle

Sunday, August 17, 2008 5:52 PM CDT

With a heavy heart I write to inform you that our sweet friend Isabelle went home to be with Jesus last Wednesday, the 13th of August. She fought long and hard against mito and her little body was just so tired. Four years ago she had a multi organ (multivisceral) transplant (like Taylor) and then later received a kidney transplant as well. Please keep her big sister Maddie and her mom and dad in your prayers as their life will be so vastly different without her here. Pray that God's grace, comfort, and people would give them the support they will need to endure the days, months, and years to come.

Also, on the same note, please remember our other friends families that are living without them here on earth...Jeffrey, Kyle, Connor, Emma, and Joel...as their grief continues.

Eliah's medical news...Things medically for him have been very stable for a long while with the exception of his belly. He is still having a hard time with his belly burning and the acid doing a number on his skin, with no real relief other than baths. While he is in the water, it feels so much better for him, but he obviously can't stay in a bath all the time.

Henry is doing well. He had labs drawn and all of his clotting factors are back where they need to be. We are so thankful for this.

Fun stuff...He and Eliah have been learning to play "hide and seek" together...Eliah hides and Henry finds him...to work on his tracking skills. Eliah loves it and Henry doesn't mind the treats. We have had to cut back some on his food and treats though because Henry is losing his "waistline". :o) He doesn't like the doggy version of weight watchers. He has been doing well with pump alarms lately and his other tricks/skills training is going well.

I think that is about it for now. I will update again with any changes and try to be better about writing more frequently. I don't know if I mentioned it or not, but his infusion is scheduled for this week. We will be doing it at home.

Thanks for checking in on us and for your prayers. We love reading your notes in the guestbook...please let us know when you stop by.

Love,
Chelle

Friday, August 1, 2008 11:18 PM CDT

UGH!! I had an update nearly finished and the computer just deleted it. Gotta love technology.

I am too tired to try and redo the whole thing so I will do a nutshell version for now...Eliah has been doing pretty well lately. Belly is still a MESS, but since that has become the new normal, we are getting used to it. Trying to make changes where we can to make things better, but not sure where to go from here.

He has started PT/SLP again and is doing well with it. PT is working on muscle strengthening, coordination, and endurance. SLP is working on his memory issues, receptive language skills, and 2-3 part directions.

Henry is doing well and has survived the whole poison incident. He amazes us daily with his ability to learn new things. He goes from fairly quiet puppy to wild elephant at home, but when he is out with us in public (in his harness) he acts like a perfect service dog. He seems to "get it".

Julie is doing well. Her limp is only slight now and usually only noticable when she is running.

That's it for now. I will try to update again soon.

Saturday, July 5, 2008 11:54 PM CDT

As usual at the Smith household, things have been interesting. I told you about Eliah's chicken dying...after she died, Eliah said, "At least I still have Henry." He found great comfort in that. Then the following day, Henry got ahold of some rat poison (it was in a locked supposedly pet safe box, but he chewed the box open and ate the chunk). Needless to say we had to rush him off to the vet to have charcoal pumped into his stomach to hopefully bind up whatever was left of it. They gave him a 50/50 chance of surviving the incident. They said that in 3 days we would know...either he would live or die. We prayed and I really believe God spared his life...he has done very well. He still has a good number of days that he has to take Vitamin K twice a day, but that is fine with us as long as he is okay.

Julie got her cast off and is doing very well. She still has a limp, the doc said that she would for about 6 months. It still hasn't slowed her down though.

Eliah's belly is still a mess...the skin is raw and the drainage has been green sometimes, greenish yellow at other times. He has been complaining about "yucky spit coming up in his throat and burning". He also spit green stuff out once the other day. Our concern is that it is reflux related again which would mean possible issues with his Nissen. NOT something we want to revisit. The last time we had to deal with this, things didn't go so well. He is on a new med to try and thicken some of his secretions and another med has been increased to try and help with his motility issues. His belly has been distended lately and again, we are not sure why. We are taking the "watch and wait" approach.

I think that's it for now. I'm tired and not really explaining things well. I might try again later. Good night for now. Please remember to keep Taylor, Sophia, Heidi, Bob, and especially Isabelle in your prayers tonight.

Hugs,
Chelle

Sunday, June 15, 2008 7:28 PM CDT

Hi. It has been a weekend full of ups and downs. I will start with the downs so that we can end on a happy note. First prayer needs of friends...our friend Bob that we talked about a while ago (cancer) is having more medical issues that need surrounded by prayer. Without giving much detail, prayers need directed toward healing, insurance, and the grace to endure it all. Our other friends Isabelle and Taylor still need loads of prayers for comfort and healing. Also, our friend Rachelle has been having more seizures which really wipe her out. Please pray that she could get a break from those.

Eliah's medical stuff has always been kind of a puzzle with missing pieces so why should I think that now would be any different? We have been doing testing over the past month or so to try and get answers to his memory issues as well as the trouble that he has with his belly. The answers to the tests are back and they are both good and bad. Good because the results are good...normal if you will. His EEG, MRI, allergy testing, ammonia levels, gastric pH...everything came back normal. Normal is a good thing...usually. The problem/question comes here...if he is so "normal" then why is he still having so many problems?? If it was just me noticing the quirks, then I would say that maybe it was just a matter of perspective, but both of his nurses have noticed it, his dad, many people. So once again we have issues, questions and no answers as to why. So while we appreciate the "normal" test results, they leave us scratching our heads wondering where to go from here. How do we help him and make things better for him?? If you know the answer, PLEASE share it with me. :o)

Now...on to Eliah's weekend...he has been having SO many issues with his belly. Toward the end of last week, we allowed him to have a strawberry from our garden and it caused all sorts of difficulties for him. He had belly pain and upset stomach along with numerous ostomy bag/wafer/disc changes. This is bothersome and painful for him. Basically a drag. Yesterday he tried some fresh milk (just a tiny sip) and a dab of fresh butter on bread (tiny piece) and again it caused pain and stomach upset with many (ostomy) changes. Common sense would tell us to not ever allow him to have anything by mouth, but he desires so much to try something once in a while...it is a hard thing to decide. It's awful to deny your child something that they want EVERY time they ask, but then allowing an occasional thing has such awful consequences that we are constantly grappling with what is best. I wish there was an answer somewhere. His primary said that sometimes it is worth allowing him some small thing...afterall we worked so hard for so long to get him to eat...now we are having to tell him no. Ugh! Yesterday we ended up changing his whole set up 5 times in one day.

The other thing that happened was that this morning one of the chickens died...you guessed it, it was Eliah's bird Lilly. I know to most folks you would think, "It's just a chicken", but to him it was his pet. He loved her. Typically after one dies, it has been our experience that another one dies within days of the first...out of sympathy or sadness? Who knows.

I said that there was good and bad...yesterday the kids got to do something that was a lot of fun for them. Eliah especially enjoyed it...they got to milk a cow. We (adults) got to as well. Then we watched as they used a little machine to separate the milk from the cream. It was then (when Eliah tasted the milk and butter) that he had belly issues), but he really enjoyed the experience of milking and then getting to try some of it. A really special day. This just reinforces for us too how much we want to live on a farm. Hopefully God will allow that soon. We have been praying about it for a long time.

The other really special thing was today. During Christmas, our firefighter friends brought a giftcard to Applebee's for the kids. Well today we finally had the opportunity where all of the kids were together so we went out to celebrate Father's Day at Applebee's. Eliah HATES eating out because for him it is just plain boring so today I had a plan. When we went in, I asked to talk to the manager...I explained that Eliah has a mito disease and that one of the ways it has effected him is that he can't eat by mouth. I then explained that the firefighters that have taken him under their wing gave us a gift card for us to bring the kids to their restaurant (this is a HUGE blessing for the other kids), but that for Eliah it was not so much fun. I asked if there was something small that they could do that would make it special for him too. She said that she would do something. After we ordered and when they brought out our food, they also brought something that totally blessed his socks off. They came with balloons and a bag of gifts that they had gone out to get at a nearby Kroger's. Abundantly more than we could have ever asked for them to do. God bless them. He had the BEST time there...he said that Applebee's is his favorite restaurant now. He really had fun.

This week we have appts. We go for Eliah's Cisapride visit which will involved an EKG, bloodwork, and then the visit with the doc. Then tomorrow, we go for the first time with his new speech therapist. I *think* that's about it.

Thank you for always keeping us in your prayers. Please pray for some relief for Eliah from all of his belly issues. Even if we could only have to change his ostomy stuff once a day, it would be so much nicer. It's just that his tummy acids eat away at the adhesive so none of it is salvageable.

Oh...I almost forgot. Julie only has about a week and a half until she goes back to see ortho about her cast. They will most likely remove it at that visit. It definitely has done NOTHING to slow her down. :o) If you could see her with the walker you would begin to fear her 16th birthday and the possibility of her driving. Thank goodness that is a LONG way off. *grins*

Love,
Chelle

Friday, June 6, 2008 12:30 AM CDT

We have gotten results back from genetics, but not neurology or Eliah's primary. Genetics said that the chromosomal tests they ran came back fine. I am glad, once again, for the good results. I am concerned that we may not find out what is causing the issues with his memory though.

We had a long weekend of tummy trouble this weekend as we ran out of some of the most important supplies that we use (to protect his skin from stomach acid). We got to exercise creativity once again trying to find new ways of making things work. Needless to say, we were thrilled to see the UPS man on Tuesday.

Eliah had a nice birthday with friends and perfect weather. He got a LOT of sand, some really cool trucks (that run well in the sand), sand toys, the "medical" baby, and some money to spend on things he wants.

Henry is fully recovered from his surgery and is all finished with the lampshade. He is, in fact, done with vet appts. until next year. He is now 60.5 lbs and is doing well with his training. He is starting to alert to pump alarms. It is still kind of a game for him...he is learning, but is doing well.

Prayer requests...Eliah's little sister Julie has been in a cast for about a week and a half because she broke her leg on a trampoline. It wasn't some big scary incident...just a little kid jumping and landing wrong. Her bone and the rebound from the trampoline didn't work well together. She has about 3 wks left in it and then we will go back to ortho to see about removing the cast.

Other prayers still needed for Isabelle, Taylor, Heidi, and Sophia. Thank you for being faithful!

Love,
Chelle

Wednesday, May 21, 2008 10:50 PM CDT

Hello again. Well we finally got the results back for Eliah's EEG and MRI and they both came back normal. This is a good thing, but still has an element of frustration as it doesn't help to explain why Eliah is having memory issues. We have 2 doctor appts tomorrow where they will check some other things that could be causing it. I will update again when we know the results for those. Hopefully they will yield some answers.

He has also been having continuing issues with his belly losing skin due to the increased acid from his stomach. We are trying everything we can think of to make this better. Lots of soaking baths have been somewhat helpful with the discomfort.

On another note, Eliah will be turning 8 years old on Friday. It is so hard to believe that he will be that old already.

Eliah has started to become more aware of how different he is from some of his other friends...this is not all negative but he is "reaching out" to connect with something/someone that is like him. He got a stuffed cow last week at church (one of his sweet teachers gives him toys when the other kids get to eat snack) and has been playing all week to make a feeding tube for it. That sparked a thought in my head to make a "baby" like him. So for his birthday we have ordered a baby doll (boy doll...anatomically correct) that we are going to adapt to be like him (central line, j-tube, ostomy bag) so that he can feel more in control of his (and his baby's) care. I will try to post pictures of him with it when we get it.

Henry (the dog) got "fixed" this past week and is dawning a lamp shade. He looks so goofy.

Please pray for our friends who are struggling so...Isabelle, Taylor, Heidi. Sophia is doing so much better but could always use prayers for continued improvement with her health.

Love,
Chelle

Wednesday, May 7, 2008 11:26 PM CDT

I wanted to share with you that Eliah asked Jesus into his heart yesterday (6 May). It came about as he was talking about death...he does this frequently...he was saying that it's not good to die until you are old. I told him that given the choice that we rather people die when they are old, but that if a Christian dies young that they go to be with Jesus. He said, "I want to be with Jesus when I die." We then talked about how in order to be with Him that you have to ask Him into your heart. Eliah then said, "I want to." I asked him, "Why did Jesus have to die?" He answered, "because of our sins". Next I asked, "What are sins?" He said, "bad things that we do". I said, "So why did Jesus have to die?" And he answered, "So that we didn't have to."

He really understands! We prayed together and he asked Him into his heart. The rest of the day, whenever he had a pain, he would ask me to pray for him.

Please pray for him, that with his short term memory issues, he wouldn't "lose" this. I want him to remember what happened. He has been forgetting so much lately.

We had his EEG done last week, but have still not heard any results. They said it would take some time. That test, as we expected, put his sensory system on edge (understatement).

His MRI is scheduled for next Monday and we now have an appt with ortho because of his left forearm. He has been having some pain in it (where the bones are fused)...the other day he had trouble going to sleep because of it. Since then, it hasn't seemed to bother him too much, but we still want to have it checked to be sure there isn't anything new with it.

We also have his opthomology appt coming up soon (I think next Friday). He has been complaining that things are fuzzy.

Henry is going (next week) to get "fixed". I explained it to Eliah by saying, "Right now everything works on Henry and we want to make some things not work". He was kind of puzzled by that so we then told him, "no puppies". He got it.

Please keep in prayer some of our very dear friends that are really going through it (still or again). Sophie is getting better, but could still use prayer. Isabelle needs God's comfort and peace. Taylor and Bev are battling so many things right now...pain for her is one major issue. And my adult friend Heidi (who has battled cancer and has a daughter with medical issues) is having more testing done because of cancer concerns. We are praying that as they "investigate" this, that it comes back showing that she is still clear. Their family has been through so much in a short period of time...they need carried through this in prayer. Two other people that are in need are Wendy and her (adult) daughter Claire. Wendy has been battling the results of lyme disease for a long time, and Claire has recently been afflicted by a terrible long term illness. She is getting better, but it is a long road (and she has a little girl too).

Thank you for your faithfulness to always pray.

Love,
Chelle

Monday, April 7, 2008 9:09 AM CDT

More memory issues this weekend. Yesterday Scott was with the little kids in the back yard, and while they were all out there, Eliah decided that he was an acrobat and walked around the top of the climber (little tykes kind...way too high for a kid with brittle bones). Scott of course told him that climbing that high wasn't safe or okay and that he didn't want him doing it again. A little later, Scott came inside and left Julie and Eliah to play in the back yard for a little while. He "spied" on them through a window and discovered Eliah all the way at the top of the cargo net (at the top of the swingset), but didn't want to say anything right then, because he didn't want to startle him and make him fall. Melody also witnessed this. A short time later (after the little kids came inside) Scott questioned Eliah about why he was climbing so high on the cargo net. Eliah strongly denied having done that without a grown up present. Obviously Scott and I felt that he was lying. He was given several chances to tell the truth and Scott even told him that he saw him doing it. Eliah still denied it, so he was disciplined for lying. Scott then went on to tell him where he saw him from and that Melody saw him doing it too, but he still denied it.

It's not that Eliah is above lying...he is 7 years old and tests the water sometimes by telling "stories", but also in the pattern of a 7 year old, he is not good at it. And he usually realizes when he is caught and gives up. This time was different. I really believe that he didn't remember doing it. Scott disagreed with me at first on this and thought he was playing us like a fiddle, but then this morning after looking at the situation and his response to it, he agrees that Eliah sincerely didn't remember it.

It's hard to know what to do about this. If, by some chance, he *is* lying, then we don't want him using this to get away with things. But on the other end of the stick, we don't want to discipline him for something he honestly doesn't remember doing. It's hard to know what to do.

I called neurology today to let them know...to keep tabs on the frequency of this. The neurologist is away this week, but will be given the message.

The MRI is scheduled for the middle of May and hopefully will give some more insight as to why this keeps happening.

Other than that (and continued tummy bleeding) things are going well.

PLEASE pray fervently for Taylor and Isabelle. Both girls are struggling so much. Obviously they have been for a while, but things are so much worse for both of them right now.

Chelle

Friday, April 4, 2008 6:36 PM CDT

Just a short update tonight. We still do not have the results back for the (mitochondrial) blood tests. Hopefully in about 2 more weeks we will have those. We went to see genetics today and she is not hopeful that the before mentioned blood tests will show much more than we already know. She did say though, that with the memory loss and similar issues, we should go ahead with a brain MRI. We do not have a date for that yet, but I will post when we do. I will also post the results as they become available. Again, not sure when that will be.

Otherwise things are going okay. We keep hoping for nicer days so that we can get out and about. I think my hair must all be standing on end now from having everyone all cooped up in the house.

Keep checking in for updates. I am trying to be better about posting them.

Chelle

Tuesday, March 25, 2008 2:52 PM CDT

Eliah had his dexascan today which showed that he is at a negative 1. That is possibly a little worse than last year, but much better than his initial screening. Last year's scan was possibly "flawed" (showing a 0) because of some contrast studies being done with his j-tube, so they are not certain if he is actually worse than last year or the same. Things have not gotten better, but may not have gotten worse. Either way he will be staying on the same infusion schedule for this next year (every 4 months) and will continue to have the infusions done at home as long as things keep going well with that. So far, so good. There is some talk of maybe trying him on the oral form of the med in the future. Dr. M said that Eliah's bones will have to improve some more and will have to show that he is able to maintain before trying to switch him over. If this happens, he will still have to be tested frequently to make sure that his numbers remain steady on that form...if he does, great...if not it will just mean going back to the IV drug.

He also had labs drawn for further mitochondrial testing to try and determine why he is having the neurological losses. Like I think I have mentioned before, they are not huge losses right now, which is good, but any loss is not good and we would like to slow them down if at all possible. We are also noticing a slight increase in frequency which is discouraging.

We have an appt with genetics on the 4th of April and will discuss the above with her as well.

The blissful ignorance of childhood is fading some as he gets older. He said just about a week ago, "I wish I was normal". I said, "you are normal". He then responded by saying, "no, I'm not...I'm not like the other kids in my (Sunday school) class". (Referring to not being able to eat, wearing his backpack, having his bag and tubes...etc). He also said about eating, "You know how you feel when somebody dies? And after a few days go by...how you are still really sad? That's how I feel about food." This broke my heart. I struggle with wanting to give him what he wants and needing to do what is best for him. His tummy bothers him so much when he eats, he gets chest pain, it bleeds and so on.

On a lighter note, he is still playing, fighting with his siblings, bucking any rule he possibly can and acting like a 7 year old boy in all other aspects.

Another thing...Eliah's new dog Henry is doing wonderfully! Today he pushed the "help" button on only the third try. This will be helpful to Eliah when he wants to be outside or in his room...if he falls or has a tube problem or something, Henry can let us know that he needs us. If you or anyone else would like to know how they can help with fundraising efforts, please see "links" and click the one for Eliah's service dog page.

Thanks for checking in on us. Please remember our dear friends Heidi and her family with various medical challenges, Isabelle, Taylor, and Sophia.

Love,
Chelle

Tuesday, March 11, 2008 8:29 PM CDT

I'm sorry...it has been a while since I updated. I didn't mean to leave you hanging once again.

Eliah's coughing is all gone now. He is doing much better in that respect. His stomach is still bleeding, but his labs for now are fine, so we are just keeping track of when and how much the bleeding occurs.

We had an appt with Neurology last week. It went pretty well, but there are some concerns with Eliah losing skills again. We are homeschooling, and for a while things were moving along pretty well...he knew all of his letters...what there names were and the sounds they made, and then he started "losing" them. He doesn't recognize K, N, M, R along with a few others anymore. He used to do this a lot...he learned to talk and then lost that...had to learn it all over again. The same with walking. He had been doing well for such a long time, we thought that losing skills was something of the past for him...until now. Again, it isn't HUGE stuff that he is losing right now, but we are just wanting to stay on top of it...to make sure that it doesn't get worse. Another thing that has been hard for him is that he has been forgetting a lot. Simple things...out of the "ordinary" things for him...like feeding his dog. He feeds him twice daily. If we ask him, within the hour of feeding Henry, if he has done it, he oftentimes doesn't remember. He will be in the middle of a sentence sometimes and completely forgets what he is talking about. Now, I do that...but I am older and pulled in so many different directions and such...it makes more sense. The neurologist thought it was worth looking into some more. He wonders if it is seizure related (little "unnoticiable" seizures) or due to his mitochondrial disorder.

We talked with the geneticist when we were there too and she wants to see him again, so we have an appt scheduled to see her in early April.

The only other upcoming appts are with Nephrology to get Eliah's dexascan done again to see how his bones are doing and from there we will learn what the frequency of his infusions will be.

I think that's it.

Chelle

Monday, February 25, 2008 11:45PM CST

Eliah is doing better. He still coughs a little bit at night...not much though. I am not fully convinced now that it was croup because it has not "acted" like typical croup. Who knows. At least it's on its way out.

We got the evaluation results back for speech and PT. Speech shows pretty significant delays in receptive speech. PT showed that in most of his testing he is about 4 years 2 months in (physical) development/skills. We are on the wait lists for both of these therapies again.

I think that's it for now.

Chelle

Thursday, February 21, 2008 11:04 PM CST

Today was a better day. Eliah seemed kind of tired though. I think yesterday's happenings took it out of him. Last night his breathing was tight again, but some better.

We went to see GI today and had labs drawn. The results came back showing that his liver numbers actually looked good as did his hemoglobin. Go firgure...when he looks *fine* his numbers are all wacky...but when he is struggling, the numbers are fine. He puzzles me. We'll take the good numbers though. Those can be hard to come by.

Still no explanation for the bleeding. The doctors aren't sure why this is still an issue and also aren't sure what to do about it. He is already on 2 meds to control the acid, so it is a "wait and see" approach that we have to take for now.

We have to go back for a repeat upper GI in March to see about the diverticulum in his esophagus. Because he has been unable to have anything by mouth for a while now, we are thinking that it might be a little better (?)...it will be interesting to see what the test shows.

We also have a follow up appt with Dr. F (primary) on all of his issues next Thursday.

I think that's it for now. Thank you for your prayers.

Chelle

Wednesday, February 20, 2008 9:21 PM CST

Hi. At 2am this morning, Julie came to me saying that Eliah needed me right now. I went in to find him struggling to breathe. He was obviously very upset which was only making the breathing worse. It has been probably a year since he had trouble breathing like this, so all of our neb treatments were outdated. We went to the ER and had chest films done...they came back fine. Actually, after getting out into the cold weather, his breathing improved a little. I guessed that it was probably croup because of how he seemed to be responding, and the doctors confirmed that.

His belly is creating LOTS of drainage, much of which is bloody. We will be getting labs done tomorrow to see what his numbers look like. Hopefully the bleeding hasn't thrown these too far off.

We will go for a follow up next Thursday with the understanding that if things worsten (with breathing or bleeding)we will go in sooner or back to the ER if necessary.

Otherwise things are going alright. Thank you for checking in on us.

Love,
Chelle

Sunday, February 10, 2008 12:07 AM CST

Just a quick update. Things have been going along pretty well for Eliah. He has still been having the bleeding in his stomach (which empties in his ostomy bag). Still no better understanding for why this continues. Saturday started with green stuff in his bag. This lasted about half way through the day. He had about two hours following that where drainage was clear, and then it returned to bleeding. This continued through the night and this morning the bleeding continues.

Things are going well with Henry. I will have to update more about this later. If you want to know specifics, please feel free to email me.

Hugs,
Chelle

Thursday, January 17, 2008 11:08 PM CST

I've not been so great at updating. Things for Eliah have been going *relatively* well. He has been playing and doing some homeschool.

Medically things have been fairly quiet, but we have noticed that frequently when we give his meds (especially his end of day meds), we put them in through his j-tube and they squirt right back out of his stoma. Obviously that is the WRONG direction. This along with some other stuff indicates that his motility issues seem to be getting worse. He also has still been complaining of chest pain, of feeling like he needs to throw up when he swallows his own spit, and then just tonight he said that it felt like he was swallowing blood. I'm not qute sure what's up with that. I'm not reacting real big about it because I want to watch things and see where they are going before trying to report it to the doc. Hoping that this doesn't mean that the diverticulum (sp) is getting worse. We will find out about that in February/March.

Thank you for keeping him in your prayers along with his friends Isabelle, Taylor, Sophia, and an adult friend from church named Myron. He was in a bad accident and had a number of injuries. He might be going home soon. Sophia is possibly going home soon as well.

Hugs,
Chelle

Tuesday, December 25, 2007 10:08 PM CST

Merry Christmas and a very happy, safe, and healthy New Year prayer being said for all of you! Thank you for your prayers and concerns over the past year. You mean the world to us!

Eliah had a very special Christmas Eve blessing last night. "Chas and the guys" (fire dept) came to the house to see him (and the rest of us). I hope they all know just how much they light up this little boy's life!

I know the picture I posted tonight is a little goofy for a Christmas greeting, but the photos just came to us from Believe in Tomorrow and I wanted to post our first ever family photo.

In my last post I wrote about doctor's appts and burned fingers. Eliah's fingers have healed up wonderfully. He has a scar, but I think with time that will fade.

The testing I spoke of (ultrasound and upper GI) were done and the results are back. The liver ultrasound was good, but because his numbers have been pretty consistantly running high, they want to keep an eye on that. And during the UGI, the found a diverticulum (sp) at the bottom of his esophagus. Basically this is a "pocket". They are not sure why this is there. The surgeon and GI specialist consulted and said that for now we can avoid surgery but that they want to re-do the UGI in 3 months to see what is going on...to see if there are any changes. So for now we wait. You don't even know how happy I am that we don't have to go in-patient for something right now (especially surgery).

Please keep our friends in your prayers. Baby Sophia is still in NICU and having ongoing issues. Pray that God would work quickly and completely to bring healing to this wee one. Also, Isabelle and Taylor are both struggling greatly and need soaking prayer.

Hugs,
Chelle

Thursday, December 6, 2007 10:58 PM CST

We had a doctor's appt planned for today, to get flu shots for all of the kids, which proved to be more necessary (the doctor's appt that is) than previously thought...last night Eliah burned two of his fingers on the stove. The burns ended up being second degree and on the one finger the blister opened, so the doctor had to debride it. That certainly isn't something that I ever want to experience again. You know it has to be done, but man is it hard to watch him hurt so much. I can't imagine how horrible it is for kids that suffer burns over a larger part of their body. He is doing much better than earlier. We did give him meds to help him sleep last night and tonight though.

His testing (ultrasound and UGI) will be done on Monday. I will post results when we have them. Hopefully this weekend won't prove to be as eventful as our week has been.

God bless your weekend. Please remember to pray for our friends: Baby Sophia (still in the NICU and struggling to eat enough...she also is having some other issues), Isabelle, and Taylor.

Hugs,
Chelle

Tuesday, December 4, 2007 0:51 AM CST

Eliah's labs came back showing that his ALT (liver numbers) are elevated again/still. They have been pretty consistantly elevated so the docs want to do an ultrasound to check on his liver. This will be done on the 10th. He will also be getting an upper GI done (same day...right after the ultrasound) to try and determine why he has the belly pain, chest pain, and where the bleeding is coming from and why. We are praying that they come up with some answers.

His motility seems to be worse...his j-tube is backing up (still)...meds sometimes come right back out after being administered. He is also still having pain and his belly is distended from whatever is going on. Again, we are praying that they will find some answers.

I will write more later. Thank you so much for your prayers for Isabelle and Taylor, along with so many others.

Hugs,
Chelle

Wednesday, November 28, 2007 11:28 PM CST

Just a quick update...I will write more later. Eliah has been getting fevers since yesterday. Not alarmingly high so far, but definitely concerning. He has also been having headaches and his legs have been hurting him more than normal. He has been asking for his leg braces. The only other thing that we have noticed is that his j-tube site is very red again. We have his Cisapride visit tomorrow and will get labs done and an EKG, so hopefully that will show what is going on if there is something of concern. I will update in a couple of days with what we find out. I am hoping that this doesn't turn into anything...we have enjoyed our time OUT of the hospital.

Saturday, November 24, 2007 0:21 AM CST

Happy Thanksgiving! I hope that your holiday was blessed. Thanksgiving is a time to be thankful for all that we have been given, but at the same time it is a time to remember those who have gone ahead to be with the Lord. Over this past year there have been so many blessings and equal amounts of loss and sadness, not only in our own lives, but in the lives of our dear friends. I take this moment now, to remember them and recognize them for the blessing they were while here...whether for many years or very few.

Eliah has been doing pretty well for a while now. We are so grateful for that. We have not been in-patient since June. This is such a long time for us. He is due for another infusion in December, but that will take place at home as the past 2 were. This in and of itself is a HUGE deal.

His cellulitis has been better for a while, though we are still dealing with a reddened area around his j-tube that extends about an inch or two depending on the day. It is painful for him, but as of our last visit, they said it isn't cellulitis anymore. We have an appt again next week and will check it once again. His j-tube has still been leaking a LOT. We switched out his button for a shorter one in the hopes that it will have less "play" and therefore leak less.

His stomach has still been bleeding. We had been letting him eat some by mouth, but whenever we do (as I may have mentioned before) he gets chest pains, belly pain, and his skin gets eaten away by his tummy acids along with the inside of his belly bleeding. We have had to stop (once again) allowing things by mouth. He has taken a new interest in chewing gum...something that before he wouldn't touch. We figured that if he can't eat, he can at least have different flavors in his mouth.

Still no word on when he will be getting placed with a new dog. The wait has been very hard on him. I had to change the home page photo because everytime he would see the picture of Brutus, he would get really sad. Pray, please, that a match would be found soon and that the next placement would be an excellent one. We so need this to work out better than the last one.

Sunday, October 28, 2007 12:14 AM CDT

I wanted to let you know of some changes that have had to take place. We had to take Brutus back to the center as things were not working out well between he and Eliah. The match wasn't a good one and that became increasingly more clear with each day. Brutus was bonding more to me and the rest of the family than he was to Eliah. In order for the two of them to spend time together, Eliah had to seek Brutus out...and anyone that knows Eliah knows that he is not a real seeker...relationships are hard for him and it is easier, in his book, just to play by himself. It's less complicated that way. We kept having to direct Brutus to Eliah and basically make him stay there. Another problem that we were having was that Brutus had started biting. He never broke any skin though, and the nipping really seemed out of character for him as his personality is generally very sweet and tender, but he seemed to not want to be "bothered", which for a service dog is just not that great.

When we went to the center to take him back, they brought out another dog to see how it's personality worked with Eliah...to get an idea for a new placement...it was amazing, the difference. This dog was very energetic and really seemed to pursue Eliah...this is what he needs. He played ball with her for a while and then started getting bored, so he stopped. She brought the ball to him and put it on the ground and watched him. As he continued to ignore her, she picked the ball up again and placed it closer to him until he played again. This kind of tickled him. On the way home he cried over Brutus, but then after a while he began talking about the other dog. He then said that he might like to have her.

Please pray that the right placement would be clear to all of us, so that we can get this in place as soon as possible.

Medically Eliah is still struggling with his j-tube. It is painful for him and leaking badly. We are working on several things to try and make this better.

Please remember our friends Isabelle and Taylor...for God's hand in their medical treatment...they are both struggling with so many things.

Friday, October 12, 2007 8:47 AM CDT

Adjustments are coming along as far as Eliah and Brutus. The bond is growing some, but his (dog) attachment to me is still stronger than with Eliah. Please pray that their affections would grow stronger quickly so that Brutus will work harder for Eliah. Otherwise the transition has been smooth from no indoor animals to suddenly having a dog around all the time. Bathtime is hilarious...I had no idea that dogs fur could hold SO much water. :O)

Health wise...he is still having trouble with cellulitis at his j-tube site. He has been growing and gaining weight though for the first time in almost a year...we are really seeing some changes this way. When we went through the rough time (middle through end of) last year and really on through this past June...he lost so much weight and got so sick...many surgeries...and just couldn't seem to gain it back. He is still having some bleeding in his stomach...not consistently enough to say it is all the time, but more often than not. That's about as clear as mud, huh? Not sure what the cause is for this either.

We keep going back and forth with letting him take things by mouth and not allowing it. We want him to be able to, as does he, but every time we allow him to do so, the acids seem to increase and tear up his skin more, his stomach bleeds more, and we notice that his stomach is working less and less to digest anything and doesn't empty well. I guess we'll just play it by ear.

Last week was hard for our family, losing grandma, but it was mixed with many blessings. Our family was together which was nice and there were sweet things...realizing all the more, the sweetness of Grandma and Grandpa's love for one another. They were married for 68 years...now a days that's really something in and of itself. And from the day of his death to the day of her death, there were 68 days...and they got to see each other again in October. I don't know if I wrote about it in here or not, but he always used to tell her (when they had to part) "See you in October". That's the stuff love stories are made of. :O)

Wednesday, October 3, 2007 12:30 AM CDT

I just got the call that Grandma went peacefully about 5 minutes ago. Thank you for your prayers and your love for our family.

Chelle

Tuesday, October 2, 2007 10:50 PM CDT

Hi. I have to apologize for not writing sooner. Training was amazing. We got there the day before we met Brutus so that we could get moved into the hotel and all. That went well and was a good decision as the following days were SO busy. There were several other 4Paws families who did the same thing. The hotel was very nice and the staff was great...helpful and welcoming of 4Paws families.

Tuesday was interesting and challenging. It started with breakfast with some of the other families and then heading off to the training center where Lisa (our nurse) was waiting for us. We all went in and sat down and were greeted one at a time by our new furry family members. Eliah was excited at first as was Brutus, but it didn't take long for them to begin ignoring one another. As the day went on and we began training I became discouraged with how Brutus longed to be with the trainer, Jeremy and could have cared less that I was there. I was simply the treat dispenser. He didn't listen to much that I said and frequently turned his back to me and layed down. I was nearly in tears and wondered how this was going to work. We went "home" to the hotel and spent the evening getting to know each other...Brutus, Eliah, and I.

Wednesday went better...Brutus listened to me some of the time and was starting to do better, but still preferred Jeremy over me, hands down. The day ended up better than it started and I left feeling more confident than the day before. We had also started forming closer friendships with some of the families. That night at dinner Eliah's belly was hurting him, was distended, red, firm...bad combination. I talked with one of the other "tube" moms about it and she agreed with me that he needed to be seen. So not the thing I wanted to do...new doctors in a strange city. We called our ped and she said to take him to Dayton Children's. They were wonderful and got us right in...they didn't have any problems with Brutus being with us either. I have to say that Brutus made such a big difference for Eliah. He was a great distraction and cut WAY back on his anxiety. Eliah pretended to "mow" the "hay field" (running his fingers through Brutus' fur) pretty much the whole time we were there. The stay from beginning to end was 4 hours...he was put on meds for cellulitis and we went "home" to the hotel. We were so afraid that they would admit him and were thrilled with the fact that they didn't. The meds are obviously done now, but the site is still pretty red, so we will be going back to the doc to try and figure out what is going on.

Thursday and Friday went well with learning new commands and with each day our bond began to grow. Eliah even got to the point where he wanted to have Brutus to lay on his legs so that he could get to sleep. Then on Friday night, Scott, Melody, Caleb, and Julie came to stay with us for a night so that they could meet Brutus. They all loved him a lot and of course he didn't mind the attn. The folling day we went to dinner at Don Pablo's and for some reason Brutus spooked and was shaking, running to get out of there, and curled up in the fetal position in the van on the way back to the hotel. I'm still not sure what got into him, but after some alone time in his crate, he was fine.

The rest of training went well. It was exhausting, but amazing...the dogs were very well matched. Jeremy has the patience of a saint not only with the dogs, but with the new parents of the dogs.

Graduation day went well. We passed...everyone in our class did. We were sad to see our friends go their separate ways, but glad to be heading back to organized chaos at home. We went to visit Taylor at the transplant hospital before going home on Friday and were thrilled to see her OUT of the PICU and down on the transplant floor. She is doing better, but still having to fight so hard to get well. We brought her sister back up to Columbus to visit with a friend and all of us went to the air show at Rickenbacker. Brutus didn't mind the airplanes, but became a "lap puppy" when they did the bombing run. We didn't know that this was going to happen prior to going there. All is going well here at home as we continue bonding with Eliah and Brutus, and training more here at home. We will be going back 2 x a month for Eliah to work more with the trainer.

Please pray tonight as we await my dear Grandma's passing. She has been struggling with Parkinson's disease for such a long time and she's tired and ready to go and meet her Jesus and be reunited with Grandpa and Aunt Trudi who passed not long ago. Please pray that the same grace that carried her through the last years of her life would be our comfort as we endure the coming days.

Love,
Chelle

Tuesday, October 2, 2007 10:50 PM CDT

Hi. I have to apologize for not writing sooner. Training was amazing. We got there the day before we met Brutus so that we could get moved into the hotel and all. That went well and was a good decision as the following days were SO busy. There were several other 4Paws families who did the same thing. The hotel was very nice and the staff was great...helpful and welcoming of 4Paws families.

Tuesday was interesting and challenging. It started with breakfast with some of the other families and then heading off to the training center where Lisa (our nurse) was waiting for us. We all went in and sat down and were greeted one at a time by our new furry family members. Eliah was excited at first as was Brutus, but it didn't take long for them to begin ignoring one another. As the day went on and we began training I became discouraged with how Brutus longed to be with the trainer, Jeremy and could have cared less that I was there. I was simply the treat dispenser. He didn't listen to much that I said and frequently turned his back to me and layed down. I was nearly in tears and wondered how this was going to work. We went "home" to the hotel and spent the evening getting to know each other...Brutus, Eliah, and I.

Wednesday went better...Brutus listened to me some of the time and was starting to do better, but still preferred Jeremy over me, hands down. The day ended up better than it started and I left feeling more confident than the day before. We had also started forming closer friendships with some of the families. That night at dinner Eliah's belly was hurting him, was distended, red, firm...bad combination. I talked with one of the other "tube" moms about it and she agreed with me that he needed to be seen. So not the thing I wanted to do...new doctors in a strange city. We called our ped and she said to take him to Dayton Children's. They were wonderful and got us right in...they didn't have any problems with Brutus being with us either. I have to say that Brutus made such a big difference for Eliah. He was a great distraction and cut WAY back on his anxiety. Eliah pretended to "mow" the "hay field" (running his fingers through Brutus' fur) pretty much the whole time we were there. The stay from beginning to end was 4 hours...he was put on meds for cellulitis and we went "home" to the hotel. We were so afraid that they would admit him and were thrilled with the fact that they didn't. The meds are obviously done now, but the site is still pretty red, so we will be going back to the doc to try and figure out what is going on.

Thursday and Friday went well with learning new commands and with each day our bond began to grow. Eliah even got to the point where he wanted to have Brutus to lay on his legs so that he could get to sleep. Then on Friday night, Scott, Melody, Caleb, and Julie came to stay with us for a night so that they could meet Brutus. They all loved him a lot and of course he didn't mind the attn. The folling day we went to dinner at Don Pablo's and for some reason Brutus spooked and was shaking, running to get out of there, and curled up in the fetal position in the van on the way back to the hotel. I'm still not sure what got into him, but after some alone time in his crate, he was fine.

The rest of training went well. It was exhausting, but amazing...the dogs were very well matched. Jeremy has the patience of a saint not only with the dogs, but with the new parents of the dogs.

Graduation day went well. We passed...everyone in our class did. We were sad to see our friends go their separate ways, but glad to be heading back to organized chaos at home. We went to visit Taylor at the transplant hospital before going home on Friday and were thrilled to see her OUT of the PICU and down on the transplant floor. She is doing better, but still having to fight so hard to get well. We brought her sister back up to Columbus to visit with a friend and all of us went to the air show at Rickenbacker. Brutus didn't mind the airplanes, but became a "lap puppy" when they did the bombing run. We didn't know that this was going to happen prior to going there. All is going well here at home as we continue bonding with Eliah and Brutus, and training more here at home. We will be going back 2 x a month for Eliah to work more with the trainer.

Please pray tonight as we await my dear Grandma's passing. She has been struggling with Parkinson's disease for such a long time and she's tired and ready to go and meet her Jesus and be reunited with Grandpa and Aunt Trudi who passed not long ago. Please pray that the same grace that carried her through the last years of her life would be our comfort as we endure the coming days.

Love,
Chelle

Thursday, September 13, 2007 11:43 PM CDT

Today was busy. Caleb and Eliah both had doctor appts. Caleb is on antibiotics and Eliah has some scripts as well. His coloring is a bit off (some differences in pigmentation). Not really sure what the cause is for this. I talked with the doc about his stomach motility. She explained that it doesn't seem that there is much motility, as anything that goes into his mouth comes directly out into his bag. She said that the food takes the path of least resistance and since the stomach isn't working, it all goes into the bag. If his stomach was working better, it would try to digest some of it. We also talked about his stoma bleeding...since his stoma is made up of stomach lining, it should be pretty tough in regard to the stomach acids. The other day we noticed a "hole" in the stoma where it was bleeding..it seems that the acids are causing some damage there and if it is like that on the outside, we are guessing (without being scoped) that it is the same inside. We have noticed some blood in his bag for a little while now. She has prescribed some meds that should coat things and promote healing.

The doc agreed that even though we need to limit Eliah's PO intake (because of how it is tearing up his skin), that it is important for him to still have the social experience of eating at least a little sometimes.

AWESOME NEWS...we found out who Eliah's dog will be. He got an email from his dog the other day...the dog's name is Brutus the Buckeye and we will be meeting him next Tuesday. Eliah is getting excited, but still unsure of what to expect. I have added his picture in with the BIT pictures up above. Brutus the Buckeye is a beautiful Golden Retriever.

Please remember our friend Taylor in your prayers as she recovers from her transplant. She has been in the hospital for over 2 months and is still struggling so much.

Thank you!

Thursday, September 6, 2007 10:55 PM CDT

Hi. We've been back home for 3 days now and so much has been going on that this is the first chance I have had to update. I'm sorry it has taken so long.

Our trip to Ocean City, MD was absolutely amazing! Eliah and Julie had SO much fun with all of the activities. So many of which were firsts for both of them. Melody and Caleb had fun too. Though getting them to admit it is something else (because they are teenagers and admitting it would seem like a defeat to their way of life.) :O)

I already told you a little about our first trip to the beach and Eliah's new wetsuit. I told you about the crab house where we ate dinner and the Pirate adventure the following day. That night was the cookout on the deck and then photos at the beach.

On Wednesday the little kids and I played Putt-putt while the big kids and Scott played lazer tag. We also got to go on a sightseeing tour (by private boat) where we learned some about the area we were staying. We got to see the wild ponies at Assateague Island and on the way back we found a horseshoe crab (dead one) and got to keep the shell. Our stinky little sea friend is currently "living" in our garage waiting to be de-funked. :O)

On Thursday we went to Jolly Rogers amusement park. The kids enjoyed the rides, but REALLY loved the water park part of it. The big kids went on the huge slides and things...the little kids and I played in the pool and rode along the lazy river. Julie was thrilled that she could touch the bottom and was our "motor" through the river. :O)

On Friday Melody and Scott took a tennis lesson and then we had a beach party with the other families that were there with Believe In Tomorrow. A few families had to leave early, and we missed them dearly, but still enjoyed the party.

We went to the Boardwalk on Saturday afternoon after riding on the OC Rocket boat. The little kids got to ride on the Ferris Wheel for the first time ever (all 6 of us rode in one "bucket"). We also rode on a Merry-go-round and went into various stores. There was a musician playing along the boardwalk that we stopped to listen to for a while. He was very good.

As you can see from my writing and from the photos...we had a wonderful time and really enjoyed the break. It was nice to do new things in a different place. It was wonderful not having any doctor appts or hospital stays while there too.

We only had one scare when Eliah got a really bad headache, was gagging and wretching, and his blood pressure was high, but by the next morning things had resolved. We think it was from being a little dehydrated.

Thank you for everyone who made this trip possible. It really was the time of our lives. We made many wonderful memories that will last a lifetime.

Love,
Chelle (ps...go see the photos)

Tuesday, August 28, 2007 10:27 PM CDT

We have been having such a fun time here. It really is incredible...all that they have done to make this such a fun week.

Yesterday we swam on the beach and Eliah had the time of his life on the beach and in the ocean. His wetsuit has made all the difference in the world! Then we went to Hoopers crab house for dinner. Eliah is usually bored during meal time, but that was not the case this night. He had a hammer and his dad was eating crab...great combination. Not only was he pounding away at the crab, but he was also smashing crayons and ketchup. Eeek. We ate out on the dock, so the kids had as much fun watching the animal life as they did with the meal.

Today we went on a Pirate adventure in the morning. I had a hard time getting the kids out of bed (the bigger kids mainly) so I threatened to tell corny pirate jokes if they didn't get up. They were dragging their feet, so I started in with the jokes. It didn't take them long after that to get up just to make me stop. LOL As we were waiting for things to begin, we got to see some really big jelly fish in the water. They are beautiful and creepy at the same time. The pirate crew did an awesome job with the kids on the boat and had them involved the entire time. Eliah wanted nothing to do with the face painting, but did enjoy all of the other activities. Julie was reluctant to let them paint her face and finally allowed them to paint a heart on one arm and a flower on the other. Melody and Caleb had a good time too. The adventure was more suited to the little kids, but part of the fun for the bigger kids and us was watching the little ones.

Later in the day we had a cookout on the deck with all of the other Believe In Tomorrow families. There were games, food, a clown, and ice cream sundaes. Then we were off to the beach to get portraits done.

In the morning we will go sightseeing on a boat and then will go to Planet Maze where the big kids can do lazer tag and the little kids can do putt-putt and go through a maze.

The other families that are here this week have been so much fun to meet. When I was preparing for this time, the thought of being with other families didn't really appeal to me because I wanted to JUST have vacation with my family, but I am glad that we have been involved with all of them to some degree. I think that these will be friendships that will last long after we leave here.

I will try to write more tomorrow night to let you know what our day was like.

Sunday, August 26, 2007 7:52 AM CDT

We are here!! The drive was long, but uneventful. We got here around 6:45 pm yesterday. The place where we are staying is INCREDIBLE! It is huge and each room is so beautiful. I have taken pictures and will post them when we get home. The first think that Eliah saw when he walked into the bedroom that he and Julie are sharing was a wall hanging (with pegs on it) that is a construction truck. He was tickled. After checking out the condo, we went down to the beach so that the little kids could meet the ocean. Julie was scared of the water and I think it will take a lot for her to want to go swimming. We will see. Eliah LOVED it. The "huge sandbox" is so exciting for both of the little kids. Last night they tried to dig to China. :O) Caleb LOVES being in the water and thinks that the waves (with all of their power) are wonderful. Even Melody had a good time down there...though I don't know that she would admit it. Scott was trying to get a picture of Melody and Eliah together and then had to run quickly to get away from a HUGE wave. As he was running he fell in the sand and stuffed the camera into it. Sand...camera...not a good combination. We are hoping that the initial pictures that we got yesterday aren't the only ones we will be able to take. He tried to get the sand out, but now the camera thinks it has the lens cap on all the time...so we will probably have to take it to a camera shop on Monday to have them look at it. :O(

Other than that, we were exhausted from the trip and went to bed.

It is another beautiful morning here and the kids want to go back to the beach. We expect Eliah's wetsuit to arrive on Monday morning at 10:30am, so I will then have to tell you what he thinks about the water when he is able to experience it fully.

Please keep Taylor in your prayers (and her mom Bev)as things are still touch and go with her.

Love,
Chelle

Monday, August 20, 2007 8:50 PM CDT

Boy has it been a while again.

We just had an appt with GI today for Eliah's Cisapride study. His EKG went well. His hemoglobin was low though, so he is being put on iron. His stomach has been bleeding so we have increased his Zantac to twice a day as well as his usual Prevacid.

He has been complaining a lot about his legs at night. We need to be more diligent about putting his leg braces on at night...I have been "nice" the past couple of nights to give him a break, but it hasn't been very helpful to him.

We are getting ready for the Believe In Tomorrow trip...it is this coming weekend. We have had some glitches come up that have to be ironed out. Please pray that God's grace would be ever present as we prepare to go and while we are there.

Please continue to pray for our dear friend Taylor. She has had a really rough last week. She coded twice in a week, but in typical Taylor fashion, she just keeps fighting.

I will try to post before our trip.

Chelle

Monday, July 30, 2007 3:51 PM CDT

Finally...me with an update. This is going to be a long one. Things have been going pretty well for a while now for Eliah. He has been having the usual issues of his stoma leaking too much (and sking break down), chest pains from reflux we are assuming, and his legs being too tight. We went to see the orthopedic surgeon and he said that Eliah's legs are tight, but since the phys med doc is dealing with that, he didn't make any changes. He is still wearing the leg braces at night to help. The other thing that the ortho was looking at was Eliah's left arm. I don't know if I typed this into a previous update...I don't think I did, but the bones in his arm (radius and ulna) that were in the process of fusing together have now completely fused. This is not a good thing, but not a surprise either...it was something we were expecting. At this point they are not going to do anything about it...the doc said that sometime in the future (when he is done growing) they could remove part of the bone which might increase his range of motion. We will wait and see (probably give him the option) what should be done when it comes to that.

He has been playing on his Miracle League team (the Red Sox) and has now finished the season. They had a nice season with mostly good weather. They had their last game on Saturday and each of the players received trophies for playing. They had a special surprise for the players and families...a video that they made throughout the season of all of the kids, buddies, and coaches. They do such a wonderful job with these kids and really make them feel special.

We have some exciting things coming up for Eliah and the rest of the family. We will be going on a trip...our first family vacation ever. We will be going to Ocean City, Maryland with Believe In Tomorrow Children's Foundation. They give families with medically fragile children the opportunity to get away from the hospitals, doctors and such to enjoy a week together doing something fun and they do this all free of charge. They provide all sorts of activities for the kids...it's just wonderful. For Eliah this means being able to be the construction man that he is for roughly 8 days, building anything he wants in the sand. I don't know what all this will hold, I have heard tell of amusement parks and the like. I will have to tell you about it all when we return. Our trip is scheduled for the 25th of August until the 2nd of September. In order for him to be able to swim in the ocean, we need to have a way to keep most of the water away from his belly (and his stomas). Obviously what can leak out can also leak in. So we have been trying to find a wet suit. We had some wonderful folks at Underwater Connection in Grandview that ordered the smallest size that they could and unfortunately it was still too big on our skinny, tiny little guy. I came home and began researching custom made wet suits and found a place called Liquid Fit...Carolyn...our new friend there took his measurements and is making one that should be here about a week before we leave. I have a feeling that this will open up a whole new world for Eliah.

Another wonderful blessing that we have received along the way is transportation. Believe In Tomorrow covers the cost of the place where we will stay as well as all of our activities while we are there, but we had to get there. With our van having 200,000 miles on it, that looked challenging until the wonderful folks at BOBB Chevrolet offered to rent a van and help with gas for our trip. All of the wonderful people that have come into our lives with the purpose of blessing Eliah mean more to us that I could ever find words to express. Everything from the trip, transportation, wet suit, fundraising help, help with getting the service dog for Eliah...it has been amazing. I just pray that those that have blessed us so abundantly receive blessings ten fold for all that they have done.

Just 15 days after we return from Ocean City, we will be embarking on another journey...we go to training for Eliah's dog. He is starting to get really excited and is anxious to find out who his new friend will be. When we finish training and before we come back to Columbus, we plan on visiting with Taylor whom we *hope* will be well enough to be in the Ronald McDonald House by then.

She is doing better than she was. She moved out of the PICU to a regular floor (though still a very protected environment). Please continue to pray for her recovery and that her body won't reject her new organs. Also, don't forget her donor family who made it possible for Taylor to live longer and healthier than before.

One last thing which really needs your prayers...we lost another dear member of our family, to death, this weekend. Our Grandpa Shoults passed away this past Saturday morning. This was Eliah's Great-Grandfather. He lived a long life...he was 91 years old, but the loss for us is still really hard.

Thank you for being faithful to pray and for taking the time to read this far. Many hugs to you!!

Chelle

Sunday, July 29, 2007 12:34 AM CDT

FINALLY!! Our computer has not been allowing us to access the caringbridge pages for a while now...don't know why, but we are back. A lot has been going on...mostly good right now. I will update a little later today, tonight, or tomorrow...right now my time schedule is too tight. I am really sorry to keep you hanging for so long.

Chelle

Thursday, July 12, 2007 10:50 PM CDT

Eliah has been doing pretty well. We have had some issues with skin break down because of tummy acids. Tonight his belly seems kind of distended near his j-tube and slightly around his g. Not quite sure what would be causing this. Hoping that it was just too much activity and that it will resolve on it's own as he rests.

We go in tomorrow for an appt with his orthopedic surgeon to check his arm (where the bones are fused) and to check his legs. It will most likely be a pretty uneventful appt.

I will update more later.

Hugs,
Chelle

Wednesday, July 4, 2007 11:26 PM CDT

Well last friday morning, Eliah's nurse had me come to look at his belly where there was a new fluid filled "thing" near his new g-tube site. We were guessing that it was infection that needed lanced. We called the surgeons office to see if we could just do it at home and they said no, that he needed to be seen by a doctor. We went in and saw a different one than usual. That one decided that we would need to come back on Monday morning for surgery to drain it in the OR. Over the weekend some of it drained, but then it took on a different look and feel. It was painful for Eliah in all phases. When we went back on Monday, Eliah's surgeon (Dr. T) came in and said that it was either a cyst or a fistula. He also said that we could take the tube out (because the site won't close with the new g-tube tract) and we could just "bag him" (ostomy bag) because of the leaking. It seems that the Janeway surgery only solved one problem...making a permanent g-tube site that wouldn't close, but it did not take care of the leaking. Oh well...at least we came away from it with one positive thing. The ostomy bag has proven to be a much easier solution (since we don't have to deal with a tube there) and has spared his skin the constant taping that we were having to do. Now we only have to change the wafer every 3 or so days. We go back tomorrow and I will be asking what the plan is concerning the cyst/fistula/abscess...whatever it is.

And for those of you who haven't heard yet, TAYLOR FINALLY GOT HER CALL AND HAD HER SURGERY. She is doing pretty well right now. You can check her webpage for updates. Her web address is in the links section at the bottom of our journal page.

Thank you for your continued prayers for Eliah and Taylor. Please also remember Taylor's donor family...it is only through their tremendous, devastating loss that they were able to bless Taylor with another chance at life. May they know the richness of God's love and grace and may they know that part of their dear child was able to continue living through Taylor.

Love,
Chelle

Wednesday, June 27, 2007 3:02 PM CDT

Things are going pretty well this week. Over the weekend Eliah played in another game for the Miracle League. He had a really good time and had lots of fans (friends and family) that came to see him play. They also did their picture day.

Later that day we were visiting with relatives and Eliah sneezed and his g-tube (new site) fell out with the balloon fully inflated! Okay...so we are *guessing* that his belly isn't tightening up quite like it should be. We ended up putting it back in that day and then took it out a different day to allow it to shrink up some. So far, so good. It seems better. We go back to see Dr. T next week to hopefully get rid of the "garden hose" tube and get either a button or be told that we can just leave it out. Hopefully by then too, the site won't leak so much. The surgery was supposed to take care of the leaking, but time will tell if it did all that it should have.

At least things are going well now. And we have a lot of neat things coming up this summer. Next month we will be going with Adventures For Wish Kids to Kings Island for a fun filled day. In August we will be going on the Believe in Tomorrow trip to Ocean City, Maryland. We will be staying in a condo there and get to play in the sand all day long (you should have heard Eliah squeal when he heard that). This will be our first family vacation ever and all due to the generosity of the folks at BIT. For those who don't know what that is, it is an organization that provides a vacation...a time away from all of the hospital and doctor stuff that is such a part of Eliah's life and of ours. They provide the place to stay, the things to do while we are there, and all we have to do is get there. It is nice to see such kind hearts in people wanting to allow a family the opportunity to FEEL like a family. It is good too, that with all that the other kids have given up on account of Eliah's medical needs, that they can do these special things. And then, in September we go for our training for Eliah's dog.

Our prayer is that we can stay out of the hospital long enough to do all of these things. Last year in July and August we were in the hospital and he was so sick. It will be nice to build some sweet memories together doing fun things.

Please pray for Taylor...we thought that she was going to be getting her call last week, and then things fell through...the organs were too far away to make it here in time. Please pray that her body would be made strong while she waits.

Hugs,
Chelle

Saturday, June 16, 2007 4:51 PM CDT

Since the last time I wrote we had another death in the family...we lost another dear grandmother. She was a believer and is now present with the Lord, but she will be greatly missed here on earth.

Eliah is finished with his IV antibiotics and seems to be doing well. He had a "lump" in his groin that was discovered the day after coming home from the last hospital stay and there was some concern that it could be another hernia. We went to the doctor yesterday and he said that it was not a hernia, but rather a lymph node that was enlarged (due to infection). It will take some time to go away, but is of no real concern. He said that the reason it was so noticeable was because of Eliah's weigh loss from the last surgery. His weight is now only 17 kilos which is 37.4 lbs. We are increasing the hours that he is on his feeds to see if we can get his weight back up. Otherwise he seems to be doing well. His new g-tube site is looking better (finally) and his incision is healing too. They still have a way to go, but are on the mend.

We go to training for Eliah's dog in September (the 18th-27th). All of our money is raised for the dogs training as well as for our stay there. We have a separate account for any money that comes in from now on and that money will go strictly for the dogs expenses (vet, food, etc.). If there is anyone that is reading this and would like to still give for this purpose, please email me and I can tell you how to go about this.

Thank you so very much for everyone that made this possible. Eliah is getting excited about meeting his new friend and helper. I think the time will pass quickly and hopefully we can spend the time between now and then OUT of the hospital. :O)

Hugs,
Chelle

Thursday, June 7, 2007 9:43 PM CDT

Just a quick update for now. We got home from the hospital today (finally). It is so good to be home. We came home on IV antibiotics. The hardest part of his whole recovery is going to be keeping him "calm" until he heals. He was trying to wrestle with Mel tonight and I was so scared that he was going to tear his incision open (there are places that are just not healed enough yet). Otherwise, he is doing okay. We also have to keep his tube still enough in his new g-tube site for it to heal.

Please pray for our family...Grandma Smith died yesterday and we just received the news today. Scott was VERY close with her and this has been exceptionally difficult for him.

Hugs,
Chelle

Tuesday, June 5, 2007 11:18 PM CDT

Well...we only got to stay home for a day before things started to go wrong. On Saturday night Eliah had a fever of 101...we were supposed to take him to the ER if it got to 100.8, but I wanted to let it go until morning to see if it improved (probably not the brightest idea). I was hoping that the fever was just his body's way of telling me that he had done too much. On Sunday morning he woke at 6am screaming in pain, gagging and wretching, had green stuff in his drainage bag that resembled squished peas, had a fever of 102, a distended belly, and had infection leaking from his midline incision and new g-tube site. Needless to say, we accessed him at home and then took him to the ER. We spent the next 14-15 hours there...waiting mostly, but also had chest films, acute abdominal series, and CT scan done. They came back saying he had a partial obstruction and that they were admitting him. They went back and forth about who's service to admit him under...general, GI, or surgery. Initially he was admitted under GI and then switched to surgery.

They did not end up having to operate (thank goodness). We do have to stay the rest of the week though to adjust his feeds and allow his incisions to heal...the surgeon said that in order for us to go home, he wanted things to be healed up better and not seeping with infection. As much as I don't want to stay here, I think he is right. He also wants to get him down to just one antibiotic before sending him home. He is currently on two.

We have NOT been in our usual unit which has been hard...it is a whole new batch of nurses which stinks because they don't know him at all, whereas the unit where we usually are they can see when things aren't going right before they get bad. Thankfully things have gone pretty well, but we still miss our usual nurses and the comfort of familiarity, and they have found us and said that they miss us too. The plus to the room that we are in is that it is bigger and has a shower right in the room, so I never have to leave him. I think if I had to choose though, I would still rather be on the other unit (or just bring our nurses with us). But I guess you can't have everything.

Today ended up being a much better day than yesterday. He seemed to feel so much better. He was a rotten little turd much of the day, but at least he wasn't feeling bad.

Wonderful news...we found out tonight that we are going to September training for Eliah's dog!! We are very excited about this. I will have to write more later. Sorry for the long period of time without updates.

Hugs,
Chelle

Friday, June 1, 2007 8:06 AM CDT

Good news!!! We are going home today. This is our shortest stay ever! His pain is well managed right now (he will go home with pain meds) and he is tolerating his feeds well. And he is definitely back to his bossy little self. :) Anyone that knows him very well knows that when he is bossy he feels pretty good.

The next update will be from home...probably sometime tomorrow.

Hugs,
Chelle

Thursday, May 31, 2007 6:38 AM CDT

Hi all. I update some through email, but didn't get to the caringbridge page until now. Things yesterday went very well. He went into surgery at about 3:30pm (an hour after the scheduled time) and was finished by 5:15pm. We went up and got the room ready and he probaby got to the room around 6:15pm...record time for him. He was gaggy when they brought him back, but was able to move around more (turning on his own and lifting his bottom to move in the bed some) than in past surgeries.

Before surgery, I talked to the anesthesiologist and asked if they could use his central line (which was already accessed) rather than starting a peripheral IV (in his hand, arm, or foot) like they usually do. She said that she couldn't guarantee anything, but that she would try. I told her that I understood that she couldn't promise anything, but that we would REALLY appreciate it if she would try. Well...when he came back to us it was not only without a peripheral line, but he also didn't have an n-g tube or a catheter. Every time he has had surgery he comes back with all three, so as you can imagine, we were all thrilled. I know these may seem like simple, little joys, but ANYTHING that makes his stay and recovery less horrible is worth gold to us. We could tell right away that he felt better than he has after any other surgery. Thank you so much for all of the prayers!!

Dr. T said that things went well and described what he did. He said, basically, that time will tell if this will work for him. The hope is that it will leak less and that we will only have to keep a tube in for short amounts of time for periodic draining of his tummy. The j-tube will remain the same and will still be used for all of his feedings and meds.

He has had pain (duh) which they are managing with morphine. He has been terribly gaggy from post anesthesia stuff and from the fact that they bothered his tummy yet again. Currently they have him on both Zofran and Phenergan (sp) for that.

Usually for each surgery we make a shirt for him to wear in to the operating room, but this time we took a zipper and told the surgeon that we thought it would be a better option. He appreciated the humor. Gotta do something to break up the time.

We have to stay until he is able to tolerate his feeds and until his pain is manageable...hopefully only a few days. I will update more later. Maybe tonight. Thank you again for your prayers and for reading this far.

We have many friends that need prayer for various reasons, but one in particular that is an intense need...our friend Taylor. PLEASE pray that she gets her call for organs soon. Also pray for her family as they have been very ill and risk spreading the germs to Taylor...not something she needs to battle. Thank you!

Love,
Chelle

Tuesday, May 29, 2007 9:43 PM CDT

Surgery is scheduled for 2:30pm tomorrow. We have to be at the hospital at noon. Eliah has been a bit apprehensive today about what tomorrow holds. He has been mopey and sad at various points. Tonight as he went to bed, I asked him what he was thinking about, and he responded with, "I am just feeling a little bit sad..." I told him that it was okay that he felt sad (and wanted to cry with him). He also said that he felt like crying.

I will try to update as soon as I am able, with how he does through the surgery.

I am going to close for now...I really am tired and I still have a lot to do yet.

Hugs,
Chelle

Tuesday, May 22, 2007 8:17 PM CDT

Hi. To think...7 years ago today I was nearing the end of a very stressful and heart wrenching pregnancy for Eliah. One that was filled with so much fear and concern...wondering if the time would come where we would get to hold our baby, alive, and have him be okay. The pregnancy was filled with threatened miscarriages, more ultrasounds than I can even count, doctors saying that the baby wouldn't make it...to go home and wait for him to die. There were several times when they would lose his heartbeat and begin to prepare for an earlier birth; preterm labor, and on and on. He came the month before he should have and through an emergency c-section to boot, but he was alive. He struggled to breathe on his own for a little while, couldn't keep himself warm, or feed well amongst other things, but after a week of intensive caring we got to bring our tiny little miracle home.

We had no idea the path we would walk or the things we would encounter along the way, both the heartaches and the joys. We have met so many wonderful people who wear their wings beneath their scrubs and doctors coats. People without whom this walk would have been so much shorter.

Not only have our doctors, nurses, and technicians been so dear to us, but everyone from our church family, to "Eliah's fire fighters -- Chas and the guys" as he likes to call them, all of our wonderful prayer partners and all who have given so much to help Eliah get his helper dog, and our families. Just to think of all the people that have been a part of our lives to help us get to this point...it is incredible.

I don't know how to thank you all. I hope, somehow, that you know how much we appreciate you.

All of that to say that Eliah will be 7 years old tomorrow!! My big, sweet, (and somewhat bossy) boy! Happy Birthday Eliah!!

Now for an update on his health. He has been fighting a "cold" for a month now. We are going into our 5th week of it. PLEASE pray that it ends before next Wednesday as he has surgery then and we don't need anything to complicate that. A praise report with that though...at least it hasn't put him in the hospital. This really is a huge deal.

We are SO hopeful that this surgery will help his leaky belly to not leak so much, and dare we hope and pray that it would actually stop the leaking?? Anything better than what we have now will be huge. The skin on his little belly is always burned from the acid and needless to say that is getting really old. We also need prayers for no seizures and no bowel obx. Pray that stitches heal quickly and that infections are kept at bay.

Thank you so much for your love and prayers for Eliah. You mean the world to us!

Love,
Chelle

Tuesday, May 22, 2007 8:17 PM CDT

Wednesday, May 9, 2007 11:00 PM CDT

I said that I would update on Sunday or Monday and here it is already Wednesday very late. I'm sorry. Sunday was a wonderful day. We had a bake sale at our church to wrap up the 4 weeks of fundraising that we were doing for Eliah's service dog. As always with our church, we were blessed beyond anything that we could have imagined. The first 3 weeks we were raising money to meet our goal of $12,000 for the training of the dog, the 4th Sunday was raising money for our travel expenses (hotel, gas for our nurses, food).

Now to Eliah's medical stuff...he has been doing fairly well lately with the exception of his leaky belly. Today however he was having a lot of belly pain. We are not sure of the reason, but after pain meds and distraction, he seemed to get past it. We will see what tomorrow holds. I just keep hoping that he can hang in there until his surgery without any "new" things coming up.

He has been coughing for about 2 weeks now too. Today for the first time, it seems as though it might be changing a bit and hopefully on it's way out.

That's it for now.

Hugs,
Chelle

Sunday, May 6, 2007 1:29 AM CDT

I know I haven't updated in a while. I will either update later today or Monday.

Chelle

Tuesday, April 24, 2007 9:28 PM CDT

Hi. Awesome news to report. Our fundraising is going VERY well. We are 2/3 of the way to our goal already. This weekend, Eliah's night nurse and some of her dear friends held a garage sale and made a tremendous amount of money to go towards his dog. And to add to that, a dear sweet little girl (only 8 years old) did some fundraising of her own and raised $650 for Eliah. At first the idea of having to raise so much money was so frightening, but after doing this, I have been so blessed to see people's hearts and God's gracious hand. I am amazed!

We had some of the labs repeated to check Eliah's liver numbers and they are coming back down. The doctor says that the increase was most likely due to a virus. We never saw any viral symptoms, but I suppose it is possible. All that really matters though is that they are getting better.

On Sunday, Eliah started a little bit of coughing...it sounded "refluxy" to me, but I can't say for certain that's what it is. It was worse yesterday and today, but not terrible. We will just have to wait and see how this plays out.

His g-tube site is a MESS and leaks so much. I can't remember if I put it on here or not, but he is scheduled for surgery again on the 30th of May to do a Janeway gastrostomy. It is the "old style" of doing a g-tube and hopefully going to control the leaking problem. He has more meds to help control the acid in his tummy, but he is still getting burns on his skin from it.

We went today to get his yearly bone density test done. We should have the results in a couple of days. I will post when we get them. On the way to the hospital we started having car trouble...there was this horrible thud, thud, thud going on. We pulled over to the side of the road thinking it was a tire or something...tires were fine...nothing was hanging down underneath. We ended up driving 35 mph on the freeway with the blinkers on all the way to the hospital. We took the "little roads" on the way home. After Scott got home and test drove the car and heard the same sound, I asked him what he thought it was...he said the hood wasn't latched. Didn't I feel goofy!! Oh well...at least the car is still safe to drive and not in the shop.

Eliah was having belly and leg pain tonight. His leg braces seem to help some, but as far as his belly, he just cried. I hate that...it just breaks my heart when he hurts like that. It isn't something that I can fix.

Please remember our friends Isabelle and Taylor. Isabelle is back in the hospital again and hurting awful bad. Taylor is still in need of organs and is now listed in two regions. Pray that her call comes soon. And remember to pray for the family that will become their donor...blessing Taylor while grieving their own loss. Continue to remember the Nobles in their grief.

Hugs,
Chelle

Sunday, April 15, 2007 6:12 AM CDT

HI. Just a quick update. I haven't posted for a while for 2 reasons...one, things are pretty much like usual...broken down skin from leaky belly stuff. We do have another surgery scheduled for the 30th of May. They will be doing a Janeway gastrostomy. It is the old way of making a g-tube and most likely our last attempt at fixing this thing.

Eliah had some labs done this past week at Children's. Everything came back pretty good except for his liver numbers. We will go back this week for them to test again and see whether things have gotten better, worse, or stayed the same.

Today begins our fundraising at our church, the Vineyard at Tuttle Crossing. Our fundraiser will last for 4 weeks there. They have been really awesome in helping me get this together. Please pray for God's timing...we want this to come about in His time...not ours.

Please, if you are visiting this site for the first time or just checking back (after a while away), and are wondering about the picture above, read in the past journal entries to learn about Eliah's exciting day at the fire department. The guys there are awesome! Every time they drive by on a run they honk and wave which totally makes Eliah and Julie's day!

By the way, Eliah's baby sister is 4 years old TODAY! Happy birthday Julie.

Hugs,
Chelle

Monday, April 2, 2007 7:38 AM CDT

Eliah had the time of his life yesterday! Let me start at the "beginning". Several weeks ago a dear friend of ours (whom the kids call Aunt Julie) said that she was going to try and arrange a day for Eliah to go up to the fire dept to see the trucks and stuff...she said it would be really neat. A friend of hers, Amy, is married to a fire fighter at the dept. where she was trying to set this up. Julie shared with them about Eliah's medical history and they wanted to do something to bless him. Amy's husband (I don't even know his name but will find out) felt that a dept. closer to where we live could do more for Eliah, so he contacted our local fire dept. and they got in touch with me. They asked whether Eliah would rather ride on a fire truck or come to the station to see all of the equipment. I said that he would love any part of that. The final plan was that they would come to the house and pick him up in the fire truck, take him back to the station, and spend a couple of hours with him. While they have done tours for kids at the station before, this was a first for them picking someone up. Eliah was thrilled.

We had a lot of family, along with a couple from church (that were taking Julie to do something special while her brother was away), his nurse Lisa, and of course Julie and Amy here at the house. I had just finished changing his tummy dressing when we heard the truck coming down the road. He knew nothing of what would be happening until it all began. He thought that everyone had just come to the house to visit. I love the innocence of children. When he first went out on the porch, he wasn't quite sure what to think. I had prepared him earlier in the day (so he wouldn't panic upon seeing the truck pull up) by saying that something special was going to be happening...that someone special would be picking him up. So when they came, I asked him, "Why do you think they are here?" He said excitedly, "TO PICK ME UP!" I told him that he should go get his fire boots, coat, and hat on. He did quickly and went out to the waiting fire fighters. They drove around the neighborhood first, then to the fire station where they showed him their kitchen, sleeping quarters, then the different trucks. He got to see the medic go on a run. The rest of the time is best told in photos which you can go and see after reading this, they will show him on the engine spraying the water cannon, and on the ground spraying the hoses. There is so much to tell yet I am not quite sure how to put it all into words. It was probably the most exciting day that Eliah has ever spent doing one of the things he loves most.

The guys (and the lady fire fighter) want to stay involved with Eliah. They plan on helping in some way with fundraising for his dog. The only reason I haven't mentioned their names in here is because of not knowing if it would be okay with them. I would love to tell you who they are, because they were all so kind to us and blessed us in more ways that I could have ever imagined.

OH...by the way...the dogs in the pictures are my sister's friend Scott's dogs. The golden's name is Cherry and the brown dog is Mookie. They are awesome dogs!

Let me go post the pictures. Please feel free to call and ask about our day. I will tell more about it if you are interested.

Real quick...Eliah's g-tube site isn't getting better. Dr. T will be doing surgery on May 30 to create a new kind of g-tube site. I will tell more of this later. He also has his infusion scheduled for later this month.

Hugs,
Chelle

Tuesday, March 20, 2007 10:29 PM CDT

It has been a long time since I updated...part of that was intentional. Because we are doing the fundraising for Eliah's dog, I wanted to leave the posting up that explained about it for new folks that might "stop by". The fundraising is going pretty well...we still have a L-O-N-G way to go before we are finished though.

<<---And about the flowers...hopefully they don't look too girly. Eliah would have a fit about that. The reason I put those up is because we are all so excited that Spring is officially (finally) here...hopefully the weather will catch on and stay warm. Eliah has been out digging much of the day today and has been busy building a "pyramid" for Kyle.

His j-tube is healing up well. He has had some granulation tissue to deal with (typical), but the hole (where the site tore) is now completely filled in. His g-tube is still a mess. Tonight he was screaming in pain because of it. I ended up putting some burn cream on it along with a skin barrier. Hopefully it will help. His tummy acids are so strong that they burn his skin whenever he leaks around his tube.

Eliah started complaining of increased leg pain (muscles?) several weeks ago. We went to phys. med and Dr. K wants to have us stretching him more and being diligent about the knee imobilizer. One night when I was putting him in bed and putting on the knee imobilizer, he said that he wished that he had 2 of them. I asked why and he just said that the leg that isn't in the "brace" hurts more and he thought having one on each leg might help them not to hurt so much. When I went in to ask for another one, the doc and his staff looked at me like I was nuts, but they did give us another one. Eliah has been SO good about letting us put them on each night.

We had an appt. in neurology last week and things there are pretty good. They still are not going to do anything (meds) for his seizures since they are so infrequent. Fine by us...we don't want any more meds.

I'm sure I am leaving something out, but I am so tired that I keep falling asleep while typing. If I think of anything else, I will re-post.

Thank you for your prayers for Eliah. Please remember our dear friend Taylor...she is still waitinng on her organs. Izzy needs prayer too. Eliah's Aunt Margie (my step sister)is doing better. She has already been cleared to go back to work.

Hugs,
Chelle

Saturday, March 3, 2007 12:33 AM CST

Okay...I forgot to say something and will add it in and re-post the last message...sorry.

Saturday, March 3, 2007 12:12 AM CST

NO MORE GARDEN HOSE!! For those that don't know, we call the regular feeding tube a garden hose because it is so much larger and more cumbersome than a Mic-key button. We went for our post-op appt Thursday and Dr. T decided that enough time had passed and that Eliah was healed up enough to receive his button. Yipee! So much easier. He is now a two button boy. The buttons pull less on his stomas and can also be "capped off" when not feeding so he doesn't have a lot dangling from him. The extention tubes (with the buttons) also have clamps on them, so administering meds is easier. Today (Saturday) he took his first full tub bath since last July!!

Another good thing...we applied for a "helper" dog for Eliah a while ago and were approved to receive one. When I first heard of service dogs, I thought that they were only for the blind or for people with extreme disabilities. What I have since learned is that there are many kinds of service animals...some for the blind, others for the deaf, ones that help with mobility issues, Parkinson's disease, seizure alert dogs, and companion dogs to name a few.

Eliah qualified based on his brittle bones and because of his feeding tube/pump. Having a helper dog will increase Eliah's ability to do things more independently. Up to this point, if he wanted to go outside in the back yard or even upstairs to play, he would have to wait until someone could go with him incase he fell. With the dog, he will be able to do more typical and age appropriate things without always having to have an adult tagging along. If he would fall, the dog can alert us that something is wrong and we can get to him...it will also alert if he has feeding pump errors during the day or night. There have been many occasions when either he becomes disconnected during the night or his tube gets pinched off and he misses a large amount of his feed. The pump alarm is not always easy to hear during the night. Since he is dependent on tube feedings, you can see where this would be a problem. Because of his seizure in January, we were hoping that he could get one that would alert us if he was having a seizure, but because he has them so infrequently, they will not be training it to do this. I have the hope that as the dog gets to know Eliah better and knows what his "normal" is, that it will sense when he has a seizure that something is wrong and would still alert for this. Time will tell. Eliah still has auditory and tactile sensory issues, though less intense than they were before...if he hears a loud noise (motorcycle, siren, thunder, etc) he melts into a heap on the floor and really struggles to be okay. They will be training the dog to do "behavior disruption", where the dog will go to him (with an adult's command) and either paw him or nuzzle him to help him through these things. It will also be trained to "retrieve" for him in the event that he is unable to get things (if he has another broken bone or surgery)...and for anyone that knows Eliah well, Eliah will be getting "trained" to NOT use this skill unnecessarily. :O)

It will be trained as a "street certified" assistance dog and therefore will be able to go everywhere that Eliah goes. This will be helpful to him as it will be a "constant" in his ever changing medical status.

Things, actually right now, are on the upswing again. We are hoping that this can be maintained for a good stretch. Last year was a really hard year, not only because of his own medical issues, but because of the losses that seemed to be never ending.

Please continue to keep our friends in your prayers, Isabelle has not been doing well, Taylor is in need of organs (and needs to remain relatively healthy until they get here so that she can stay listed). Our good friend Bob got his tube and is starting chemo and radiation. His tube has been really sore and is just not something that he or his wife ever had to deal with before, so it's a lot. Everyone knows that chemo and radiation stinks, so pray that he will do well through it and have as little side effects as possible. Pray especially that the treatments will wipe out the cancer completely. Maggie needs prayers for her heart...she needs God to heal it.

My step-sister Margie was very sick (pneumonia and was septic) and on the ventilator for approx. 8 days (I think this is right)...when she first went into the hospital, they said she had only a 25% chance of making it...well, guess what...they were wrong!! She is home and doing much better. She has a LONG recovery ahead of her, but she's getting better.

Thank you to everyone that is so faithful to pray, call, visit, leave notes in the guestbook, and everything else that you have done to be a blessing to us. We couldn't do it without any of you.

All our love,
Chelle and the rest of the Smiths.

ps. Because of the cost of training a dog for Eliah's needs we are going to be fundraising for a while. If you or anyone that you know of would be interested in helping out, feel free to email me and I can give you more details. My email is MamaSmith2@aol.com .

Saturday, March 3, 2007 12:12 AM CST

NO MORE GARDEN HOSE!! For those that don't know, we call the regular feeding tube a garden hose because it is so much larger and more cumbersome than a Mic-key button. We went for our post-op appt Thursday and Dr. T decided that enough time had passed and that Eliah was healed up enough to receive his button. Yipee! So much easier. He is now a two button boy. The buttons pull less on his stomas and can also be "capped off" when not feeding so he doesn't have a lot dangling from him. The extention tubes (with the buttons) also have clamps on them, so administering meds is easier. Today (Saturday) he took his first full tub bath since last July!!

Another good thing...we applied for a "helper" dog for Eliah a while ago and were approved to receive one. When I first heard of service dogs, I thought that they were only for the blind or for people with extreme disabilities. What I have since learned is that there are many kinds of service animals...some for the blind, others for the deaf, ones that help with mobility issues, Parkinson's disease, seizure alert dogs, and companion dogs to name a few.

Eliah qualified based on his brittle bones and because of his feeding tube/pump. Having a helper dog will increase Eliah's ability to do things more independently. Up to this point, if he wanted to go outside in the back yard or even upstairs to play, he would have to wait until someone could go with him incase he fell. With the dog, he will be able to do more typical and age appropriate things without always having to have an adult tagging along. If he would fall, the dog can alert us that something is wrong and we can get to him...it will also alert if he has feeding pump errors during the day or night. There have been many occasions when either he becomes disconnected during the night or his tube gets pinched off and he misses a large amount of his feed. The pump alarm is not always easy to hear during the night. Since he is dependent on tube feedings, you can see where this would be a problem. Because of his seizure in January, we were hoping that he could get one that would alert us if he was having a seizure, but because he has them so infrequently, they will not be training it to do this. I have the hope that as the dog gets to know Eliah better and knows what his "normal" is, that it will sense when he has a seizure that something is wrong and would still alert for this. Time will tell. Eliah still has auditory and tactile sensory issues, though less intense than they were before...if he hears a loud noise (motorcycle, siren, thunder, etc) he melts into a heap on the floor and really struggles to be okay. They will be training the dog to do "behavior disruption", where the dog will go to him (with an adult's command) and either paw him or nuzzle him to help him through these things. It will also be trained to "retrieve" for him in the event that he is unable to get things (if he has another broken bone or surgery)...and for anyone that knows Eliah well, Eliah will be getting "trained" to NOT use this skill unnecessarily. :O)

It will be trained as a "street certified" assistance dog and therefore will be able to go everywhere that Eliah goes. This will be helpful to him as it will be a "constant" in his ever changing medical status.

Things, actually right now, are on the upswing again. We are hoping that this can be maintained for a good stretch. Last year was a really hard year, not only because of his own medical issues, but because of the losses that seemed to be never ending.

Please continue to keep our friends in your prayers, Isabelle has not been doing well, Taylor is in need of organs (and needs to remain relatively healthy until they get here so that she can stay listed). Our good friend Bob got his tube and is starting chemo and radiation. His tube has been really sore and is just not something that he or his wife ever had to deal with before, so it's a lot. Everyone knows that chemo and radiation stinks, so pray that he will do well through it and have as little side effects as possible. Pray especially that the treatments will wipe out the cancer completely. Maggie needs prayers for her heart...she needs God to heal it.

My step-sister Margie was very sick (pneumonia and was septic) and on the ventilator for approx. 8 days (I think this is right)...when she first went into the hospital, they said she had only a 25% chance of making it...well, guess what...they were wrong!! She is home and doing much better. She has a LONG recovery ahead of her, but she's getting better.

Thank you to everyone that is so faithful to pray, call, visit, leave notes in the guestbook, and everything else that you have done to be a blessing to us. We couldn't do it without any of you.

All our love,
Chelle and the rest of the Smiths.

Wednesday, February 13, 2007 11:08pm CST

Eliah's stoma is looking better. It still has a ways to go, but is at least heading in a positive direction. I think we are about half way there.

We have seen, twice now, blood coming back in his j-tube. We talked with surgery today and if it happens again, they want to see him. Not really sure what can be done at this point as he is already maxed out on his Prevacid...assuming that it is from the tummy acids and the effects that they are having. I guess we'll cross that bridge when we come to it.

He has also been complaining of chest pains. He had been only complaining about this after eating (before surgery), but now complains at various times...this morning, very early the pains woke him up. I am not sure if this is a GI issue, or if we should talk to cardiology or the ped about it.

I have not heard back yet about the labs that we had done last week. I plan on calling the doc in the morning to see if results are back on those. I don't know if I wrote about those being done last week or not, but they were done because of how pale he has been and how dark his eyes have been. I will post if there is anything impressive.

I think that's it for now. Please continue prayers for Izzy, Taylor, Kyle's family, and Jeffrey's mom.

Love,
Chelle

Thursday, February 8, 2007 3:43 PM CST

Sorry for the long time between updates. We have been back to the doctor several times since coming home because of troubles with Eliah's new stoma. His j-tube site looked beautiful after Dr. T placed it, but after coming home the stitches pulled through the skin and were no longer serving the purpose of holding the tube in place. Thankfully there was still a balloon present and a LOT of tape. When they came out, the tube site tore and got really big and ugly (about 2-3mm deep and about a cm long and a cm across). Definately not what we wanted. We are letting it heal from the inside out and that seems to be going pretty well. It is still ugly, but with time, hopefully it will look better and serve him well.

Other than that, things are going okay. We are still without a PT and need to find one. He is much weaker and has lost about 2 kilos (4.5 lbs) since going into the hospital.

I will update more later.

Please remember Taylor, Isabelle, and Kyle's family in your prayers.

Chelle

Monday, January 29, 2007 10:13 PM CST

We got sprung! We arrived home today around 1:30-2:00pm. Eliah is doing better. He is still having pain and green drainage though. We are hoping that after starting him back on his Cisapride things will get "moving" again. We left before he reached his goal rate (on feeds), so we are working him up here at home. He looks like he lost weight while in there and is very pale. I'm still wondering if we should have his hemoglobin checked again.

I'm too tired to write more right now. I just wanted to let you know that we are back and readjusting to being home.

Remember Kyle's parents...the days are long and each one only seems harder for them...trying to figure out how to go on. Pray for Kelsey (his sister)...kids deal with things so very different than adults do. And all this while she is watching her parents grieve.

Taylor also needs intensified prayers...she has been having more pain and fevers. She needs to stay well in order to remain eligible for transplant.

Love,
Chelle

Friday, January 26, 2007 8:49 PM CST

Oh...so much has happened this week. He has still been having fevers all day and the labs show nothing that should be causing it. Nice...another mystery thing. Last night Eliah had a seizure...his first in nearly 2 years. Needless to say, I was not thrilled. He was asleep, the television was on, I was brushing my teeth...I glanced over and noticed that he had turned from his side to his back and had his eyes open...I said, "hi baby" and he didn't respond. I asked him if he was okay 2 different times...again no response. He looked like he was drifting off to sleep again, so I watched to see that he was okay (sensing that something wasn't) and noticed that his eyes were moving strangly as was his tongue. His upper lip (the left side of it) and left cheek were twitching, and his entire body was shaking. Not thrashing about, but shaking. I kept talking to him and occasionally he would open his eyes for a second and try to look at me, only to go back to the strange eye movement (all while he was trembling). This went on for approx 3-5 minutes...during the latter part of it one of his nurses were in the room...I said to her, "would you look at this?". Then I asked her if it looked like seizure activity to her. She said that it could be and said that she would let his night nurse know about it. The night nurse documented it. After the seizure was over, his lip and cheek continued to twitch for another (approx) 5 minutes. He slept like a rock for the rest of the night and didn't even wake for pain. The poor kid was exhausted. Today he was still tired a lot and has had a lot of belly pain and horrible amounts of gas in his drainage bag. His drainage now is green again and there is some discrepency (sp) as to why. I will have to find out more about what the nurse is saying before I try to write about it on here. I will attempt to update tomorrow if I am able.

Hugs for now.

Thurs:

Today Has been hard...he has not been able to keep his sats up...at one point they were down to 76% so obviously we had to put him back on his O2. He has been having fevers of 101.8, which again for anyone that has followed him very closely, knows that is a very high fever since his baseline is so much lower than "normal".

Weds:

Today has not been such a good day. Eliah's pain has been pretty bad -- this is made most obvious by how "shut down" he has been. If he said 15 words the whole day, I'd be surprised. We tried taking him off of his O2 but weren't able to for very long because his sats kept dropping.

Tuesday, January 23, 2007 7:36 PM CST

Surgery is over. Things went nearly as expected. *gasp* As I said in my previous post, the endoscopy went well and we will know more on Thursday. When Dr. T came out from doing his part, he said, 'you were partially right'. What he meant was that Eliah had a partial obstruction and a small hernia (where the bulge was). He repaired the hernia. The obx was in his small bowel where the j tube needed to go so Dr. T removed the three inches of damaged intestines before placing the j tube.

I will update more tomorrow. Hugs and thank you for your prayers.

Chelle

Tuesday, January 23, 2007 11:45 AM CST

We are in the surgery waiting room. The first procedure (endoscopy) is done and from what they could see, things looked good. They took biopsies and should have the results back hopefully by Thursday. The second part of what they are doing today (j tube, g tube revision, cleaning up adhesions, possible hernia repair aka bulge) started just a little before noon. They said that they will call every hour to hour and a half to give us updates on his status. I will try to update as soon, after it is finished, as possible.

Thank you so much for checking in on us. We love you and appreciate your prayers.

Hugs,
Chelle

Monday, January 22, 2007 1:50 AM CST

Quick note...we go in tomorrow at 2pm. My guess is that tomorrow will hold lots of information giving (me to the nurses/doctors) as is typical of any hospital stay and a second not so pleasurable "liquid draino" to clean him out for surgery. Please pray that this isn't miserable for him and that we would both be able to get at least a little rest to be ready for his surgery on Tuesday.

I will update as I am able, but as of right now, I have no computer. Hubby's (that I have used on past stays) suffered an orange juice spill on a road trip and hasn't been right since, so I will be without. The only one that would be close enough for me to use is down the hall, but I probably won't want to be that far away from Eliah for at least the first couple of days. So please be patient with me.

Hugs and love to all of you. Please remember our friends Izzy, Taylor, and Kyle's family in your prayers.

Love,
Chelle

Monday, January 15, 2007 4:14 PM CST

Hi. Not too much going on lately. We are all in various stages of grief over Kyle's death. Scott and I talking and crying still. The little kids are incorporating it in to their play. I'm told this is a healthy form of processing, but it is hard to listen to. Julie said the other night (very sad and regretful) that she forgot to tell Kyle something before he went up to heaven. She was very sad about it, so I told her that she could tell God what she wanted Kyle to know and that God would tell him for her. She also keeps praying (every prayer) that "Kyle could come back down now". She doesn't understand the permanence of death. Eliah has been very angry and has been acting out in disobedience...I think this is the best he is able to deal with it right now. He talks some. He gets irritated with Julie that she doesn't understand that he isn't coming back...that we won't see him until heaven.

Medically, he is hanging in there. We have been pretty sure that he is working on a bowel obx, but for now things are okay. We are being diligent to give him Miralax 1-2 x a day to keep things moving. His bulge has increased in size from 47cm to 55.5cm...not sure why.

Fun things...Eliah and Caleb went with their Aunt Kelly and her dear friend Scott to see a monster truck show. He was THRILLED.

Please continue to pray about his upcoming surgery next Tuesday (the 23rd). Also, we have several friends that are in need of continued prayer. A family friend Bob recently found out that he has cancer. Nutshell version...he needs a miracle from God. Also our friend Taylor finally got listed for her organ transplant and she is at the top of the list. What this means is that when they have organs available she will be the first candidate to receive them. This is wonderful news and very difficult news altogether as it means that she finally has her second chance at life soon, but also that she is VERY sick and that someone else will have to experience devastating loss for her to benefit. Please pray for her family as well as her future donor family. Please, if you aren't already, become an organ donor.

Last but definately not least...please remember to keep Kyle's family in your prayers. Their life is now so drastically different and filled with pain...more than they could have imagined.

Hugs,
Chelle

Wednesday, January 3, 2007 4:05 PM CST

Today we buried Kyle. It was such a sad time in so many different ways. Sad for us and all of his other friends because of missing a dear friend, but even more for his family...trying to grasp what life will be like not having him here anymore. Everyone is committed to keeping his memory alive here on earth and honoring who he was and what God sent him to do...to touch peoples lives in that special Kyle sort of way. There are many things that his family is planning to do in the way of scholarships and funds in his name to help other medically fragile kids.

On the Eliah front...things are going better...he finally had a BM (big one...I know...more details than you probably wanted, but the reason for the next thing) and since, his drainage has cut back dramatically. I think if this hadn't happened we would have probably ended up back in the hospital. Praise God, this time we got off "easy".

That's it for now.

Hugs,
Chelle

Tuesday, January 2, 2007 0:23 AM CST

Eliah has been feeling well lately, but is starting to have some signs of things not going quite like we would like them too...a little too similar to earlier in December when he had his obstruction. He has had (earlier today) a slight greenish tinge to his drainage, no BM's, and his belly is growing (but still soft). He has also been having a huge increase in his output from his g-tube...more than he has ever had, so we are not quite sure what to think of that. We are being cautious to watch everything right now, but not yet worrying. Hopefully this will prove just to be a little hiccup and nothing that will need hospitalization.

Please continue to pray for Kyle's family and friends as we are all missing him so much. We all know that he is safe in God's arms and that he isn't sick anymore, but between now and when we will see him again, the pain of not having him here is so great.

Hugs,
Chelle and Eliah

Friday, December 29, 2006 11:16 PM CST

As many of you know, we are filled with sadness tonight as we mourn the loss of our dear friend Kyle Noble. He was Eliah's first and best friend. We will miss him greatly. Please remember his family as you pray tonight and in the coming weeks and years. They need it now more than ever to carry them through.

If you feel led, stop by his webpage and leave a message of support and prayers for his family at www.caringbridge.org/oh/kyle

Hugs,
Chelle

Sunday, December 17, 2006 10:14 PM CST

Eliah's infusion went really well and he had no noticible side effects from it. Praise God!!

Things here are going pretty well. He is back up to full feeds and tolerating them. He was even able to start taking some things by mouth today. His belly hurt some with this, but we will see how he does as time progresses.

I'll have to write more later. I"m really tired.

Hugs,
Chelle

Wednesday, December 13, 2006 10:58 PM CST

We are back home now, since about 5:30pm. Getting released today took a good bit of begging on my part, but I "got my way" and we are home. We got the first day of his pamidronate infusion done while we were in the hospital. The next two doses (4 hours each day) will be done at home. This will be our first time doing infusions at home. Please pray for no fevers, bone pain, or seizures. He did really well today with the first dose so I am pretty confident that the rest should go well.

This stay was really trying for our family...more so and in different ways than others...the unexpected nature of it, not knowing what all was going to happen for a while, not having a "plan" in place...the stress level is through the roof and tensions are on high. In the past (for the most part) we have gone in for surgeries or infusions...planned on stays, and even when the stays don't go as planned, it at least feels a little more "prepared for" than this one did. We are going to try implementing several things to help the kids cope with all of the changes that are a constant part of our life. Please pray that we go about it in the best way possible.

Hugs,
Chelle

Tuesday, December 12, 2006 2:41 PM CST

Another (hopefully) quick update. We have had LOTS of testing done and things are looking better. They did an upper GI with small bowel follow through earlier today and said that the obstruction has resolved and that he WILL NOT need surgery at this time. PRAISE GOD! We are trying DESPERATELY to get the docs to let us go home tomorrow, but this will basically take moving a mountain as we have only JUST started pedialyte today and still need to see if he will tolerate his feeds. We have adjusted his feeds before and really don't consider this a big deal, but considering what we have just been dealing with, we don't want to do something that will cause us to have to come back in here either.

We will have to come back next month for another surgery. This will be placing the j tube (separate from the g), cleaning up the old g-tube site or making a new one, and cleaning up the adhesions in his intestines. We are praying that all will go as well with this next surgery as things have gone with this latest issue.

PLEASE continue to pray for Kyle and Taylor...Taylor has tests next week and would really like to be home for Christmas (which they have not even been able to set up for) and Kyle was admitted again last night to the PICU. For those that I usually give a more detailed update to about Kyle, I will be emailing you either later today or tomorrow.

Thank you so much for your prayers and love.

Hugs,

Chelle

Sunday, December 10, 2006 10:46 AM CST

Quick update...we are back in the hospital. We came into the ER on Friday night. The day had actually been fine up until about 5pm and then Eliah started draining green and complaining that he didn't feel well...intense belly pain (where his bulge is), gagging/wretching, the works. I checked his temp but that was fine at 96.6. We decided around 9:30 that we would go to the ER and by the time we got our stuff together and got checked in there it was 10pm. We were in the ER until 7 the next morning when they admitted us to the 4th floor. Upon doing a CT they found that he had a high grade partial obstruction. Partial meaning not complete and when I asked what they meant by high grade, I was told by the surgeon that it meant really bad. Neat. They now have both of his tubes open to straight drain to try and decompress that area and *hopefully* avoid surgery. The surgeon was doubtful that it would work, but it is DEFINATELY worth a try. Last night he did have 2 bm's and today 2, so hopefully that means things are resolving enough to avoid another operation. We just had an acute abdominal series (x-rays) done to see if things are resolving. I will update later and let you know what happens.

Our friend Taylor is back up here in Columbus Children's and in the room right next door. If we have to be here, and she has to be here, at least we can be next door neighbors.

Hugs,
Chelle

Saturday, December 2, 2006 10:33 PM CST

We have now had two full weeks with our new nurse Lisa and we are all very happy with the decision. It is amazing...the peace that comes with a good "fit". It has also helped that we have not had PT for these two weeks because Eliah's PT is out of town...this has given Lisa a chance to get used to Eliah's med schedule, the routine of doing his ostomy/stoma care, the craziness of our house alone without the added stressors of going out and about a ton.

Eliah had to get his g/j button replaced yesterday as the old one was being eaten away at by his tummy acids. Amazingly enough, everything went very well with it. Usually this is a very traumatic event, but he handled it well this time.

We scheduled Eliah's next infusion to be done here at home on the 13, 14, and 15th of December. This will be a first. We are excited about not having to be in the hospital for this and pray that all goes well so that we can do all future ones at home too.

Please continue to keep our dear friends Kyle and Taylor in your prayers. Kyle's health continues to decline and he feels too tired and sick most of the time, making even playing difficult. And Taylor is going to Cincinnati for her transplant evaluation. On that note...please consider becoming an organ donor...there are so many people that are in need of them...many of which are children that would just like to have a chance at life. Also, please support the MDA...along with all of the other things they do, some of the money that they raise goes to support mitochondrial research...we really need to find a cure, or at least an effective treatment for this illness. You can go to www.umdf.org website to find out more about mitochondrial diseases.

Thank you! Hugs,

Chelle

Tuesday, November 21, 2006 8:47 PM CST

WE HAVE A NEW NURSE!!! My cousin started yesterday and we are all thrilled with her being here. This is definately going to be a good arrangement. She is able to work the full 5 days that we have needed coverage. Anyone that has had to deal with in home nursing knows what a challenge it can be finding someone that can cover the hours you need as well as "fit" in with your family. She does both and is a quick learner and a real go-getter.

The cultures that the doc took came back showing Klebsiella which from what I read is normal to have in the large bowel, but not so good in the belly. He is on Bactrim for that because apparently with the different forms/strains of Klebsiella there are only certain drugs that work on the different kinds. The one that he has is supposed to respond to Bactrim. So far the only thing that we have noticed is that his drainage over the last 3 days has been less. Not sure if this is due to the med changing things enough inside or if it is just another quirky Eliah thing. Less drainage, whatever the reason, is a plus right now as he is having a lot of issues with skin breakdown that is down into the second layer of skin.

We found out last Thursday that Caleb was going to be serving in the Honor Guard (Civil Air Patrol) at the Extreme Makeover Home Edition in Whitehall. We thought that he would only be serving in this capacity for a couple of hours...lol...try 7. It was on Sunday and it was such a cold, windy, and rainy day. The whole family (minus Mel) went along for several reasons...one to watch Caleb, and two, because Ty Pennington is Eliah's hero. He became Eliah's hero when he did a house for another family that has a child with brittle bones. When Eliah saw what they did to make the little boy's home safe for him, he said, "I could play there and be safe too". So obviously when Eliah heard that Caleb might get to meet Ty, he just had to go. Despite every effort, we didn't get to meet Ty, but we did meet many people that were part of the whole Makeover volunteer crew. They were such a blessing to all of us from providing drinks and a warm tent to get out of the weather, to taking Eliah rides on a Gator service vehicle, to giving him and Julie things to remember the day by. They even walked with us up to the house to try and have an opportunity to meet Ty, and though we weren't able to do that, we did meet John and gave him Eliah's web address and asked him to give that to Ty. Here's to hoping and praying that can happen as it would make Eliah's entire world! I will post some pictures of our time and some of our new friends from Extreme Makeover sometime in the next couple of days.

Please, please, please remember our many friends (Kyle, Taylor, Isabelle, Sarah, Derick...)that are struggling with very serious health issues right now.

Hugs,
Chelle

Thursday, November 9, 2006 10:49 PM CST

We went to the ped last week because of the belly pain and another bout with bacterial overgrowth in his intestines. We finished the meds earlier this week (thank goodness because it smells like horse poop in a jar). So now we wait to see if it comes back. It seems like there is something else going on with yeast too because his belly smells like it is fermenting. The doc did take cultures...haven't heard yet what (if anything) they showed. I will call tomorrow about this.

Concerning the belly bulge...it has been more painful for him and the doctor wants us to put an abdominal binder on him to help support it, until we can actually fix it early next year.

He still wants to eat, but has pain after taking a few bites.

We got some good news this week...our cousin Lisa passed her boards, got her IP number, and will be starting as our nurse on the 20th of this month!! We are all very excited about this.

Please keep our friends Kyle, Taylor, Isabelle, and Heidi in your prayers. Kyle and Taylor are especially critical right now.

Hugs,
Chelle

Wednesday, October 25, 2006 7:56 AM CDT

Just a quick note. I'm sorry for being so long in between updates, but lately Eliah has been more stable and so I haven't updated. Sorry for leaving you hanging though.

Stable, that is, until last night. He ate some mac and cheese (his eating has been better), but got a belly ache while he was eating. This is something that happens nearly every time that he eats. I have been attributing it to the fact that his stomach just isn't used to having stuff in it. Not sure if that is the case, but my guess. We went, right after dinner, to Melody's choir concert through which he was fidgity and complaining of his belly hurting. He had also been crying just prior to the concert for the same reason. After coming home and getting him ready for bed (still complaining) he said that it hurt too bad to sleep and he requested his Chloral Hydrate...please understand that he hates this med and for him to request it, you know that it's bad. He slept for 2 hours before his dad changed his diaper. While being changed (and pretty out of it) he was whimpering in pain. About an hour later he woke screaming and crying. This was the rest of the night. He couldn't find a comfortable position, was gagging and wretching...it was ugly. So far this morning he seems a little better (this just being the last 2 hours...one of which he was sleeping). We will see what today holds. I have emailed his GI specialist to give her a heads up "just incase" we need to go in.

I will try to update soon.

Hugs,
Chelle

Saturday, October 7, 2006 9:46 AM CDT

We had the ultrasound done this week (on Tuesday). I just heard back from the ped yesterday and she agreed with what the radiologist said, that there was some necrosis of fatty tissue, weakening of the muscles, and displacement of organs due to the operations and abscess areas. As far what to do...we aren't going to be doing anything other than watching for now. Obviously if something else would happen that would make it a more emergent situation, then we will act on that, but for now we are waiting. When it gets closer to the time of fixing the g-tube site and placing the primary j, then we will re-examine to see if they should place some supportive materials in the area of the bulge.

The med that the ped put Eliah on (for bacterial overgrowth) smells like horse poop in a jar. It is the most awful stuff, but it seems to be helping with the odor. He has had an incredible amount of drainage lately. Not quite sure what's up with that. There were two days where he drained blood, but now that has subsided.

Other than that, he is doing pretty well. He has had a "cold"...and for the first time (I think) it has JUST been a cold. We haven't had to do any nebulizer treatments (so far) this time around. Julie is better too from her cold.

We are off to play at Miracle League Baseball for the first time in 2 weeks as the weather has not been cooperative and the last 2 games have been rained out. He is excited to be able to play again. We only have one more game after this. Pray for good weather for all of the teams over the next 2 weeks.

Please continue to keep Kyle, Izzy, and Taylor in your prayers as you are praying for us.

Hugs,
Chelle
Hugs,
Chelle

Friday, September 29, 2006 6:39 AM CDT

We went to the ped yesterday and after further examining the bulge she feels that more testing needs to be done. She feels that it might be a hernia in the abdominal wall and is going to order an ultrasound. I expect that to probably happen within the next week.

We felt so validated yesterday when we saw the doc...she was repulsed by the odor coming from his ostomy bag. I told her, "that is nothing compared to the dead animal smell that we are used to dealing with". She said, "it's worse than that??". She is looking into a different medication to fight bacterial overgrowth to hopefully lose the smell. The reason I say we felt validated is because she not only gave appropriate attn to the bulge (that up until now has been "noted", but not handled in any way), but she also showed the same concern over the amount and odor of the drainage that he has been having.

Eliah's little sister has not been feeling well lately. She had a fever for a day, sick stomach for 2 days, then was better for 2 days, and now has a "barky" cough. Please pray that she feels better soon and also that it wouldn't be a "shared" germ with the rest of the family...especially Eliah.

Also please remember our friends Kyle, Taylor, and Izzy in your prayers. Kyle's health is continuing to decline and he really needs God to intervene. Izzy has lost some of her sight and they are not sure if this is a permanent thing, but most obviously very discouraging for both her and her family. Pray for God's touch. I haven't talked to Taylor's mom in a few days, but her GI system is a mess and also really needs God's healing. Thank you for remembering our friends.

One last thing...please continue to keep Cindi (Jeffrey's mom) in your prayers as she is having to learn how to live each day without him here. If you will remember, Jeffrey passed away in July from a brain tumor...he was only 12.

Hugs,
Chelle

Wednesday, September 20, 2006 11:09 PM CDT

Admitted and now back home. I'm sorry that I didn't update sooner. I didn't get on the computer with enough time to update until now.

Our stay was 5 days and didn't accomplish a whole lot. We took the tube out to shrink down the stoma several times, but each time that they would replace the tube, the stoma would stretch back out again. At one point, it had closed down so much that we almost couldn't get a tube to go back in. He went in with a 16f tube, but when it closed down so much, obviously that wouldn't go back in, so they tried a 14f which also didn't work, so then they tried a 12f foley and after much work, were able to get it in. It took a while to get a regular g-tube up to the floor (to maintain the hole) and by the time it finally arrived, the hole had stretched enough to be able to fit a 14f in easily. By morning it was leaking terribly again and they just decided to go ahead and put in a g/j button. I asked about the leaking and constant dressing changes...I asked if we could use an ostomy bag to catch all of it and they agreed that would be a good solution for now...the ostomy wafer protects his skin from further breakdown and the bag catches all of the gook. It is messy and stinky, but WAY better than what we were living with before. The plan for now is to go back in probably in Jan. or Feb. to place a primary j tube and either revise or close the current g-tube site. We need to have some form of a g-tube for the purpose of venting his tummy...so we will see what works out for him.

Tonight we noticed that the bulge in his belly is much bigger and harder. I am going to try to get him in to see the ped tomorrow to get her opinion on it. It was completely not addressed at the hospital.

Please pray for our friends Kyle, Izzy, Taylor, and Megan. They are all going through a lot of really tough medical stuff.

Hugs,
Chelle

Tuesday, September 12, 2006 5:48 PM CDT

The CT was last Friday and it was not real impressive. This is good in many ways as it shows that there are no abcesses or leaking into his abdomen. It didn't show anything about the bulge...at least not as far as we have heard. We still feel (and so does the ped) that something is going on with the abdominal wall (hernia?). I will be asking more about this. Something interesting happened when we were putting the contrast (for the CT) in his j tube...it came out through the g-tube into the drainage bag. Obviously something wasn't right, but I am hoping it is maybe just an issue with his motility that day? Who knows. I will ask more about that too.

I will have plenty of opportunity to ask questions as they are admitting us again tomorrow morning at 10am. The reason for this admission is to take the g/j tube out to allow the stoma to shrink down some as it is STILL leaking like crazy. After it closes up some, they will reinsert the tube. Not sure just how long we will be in. Of course I have my sights set on a very short stay, but I almost know better than to think that way. We just have to wait and see how he does.

Please keep him in prayer.

Hugs,
Chelle

Thursday, September 7, 2006 10:21 PM CDT

We saw the surgeon today, as well as getting an EKG and having Eliah's Cisapride visit in GI. The cisapride visit went well...Dr. B is pleased with Eliah's weight and the fact that he is able to sleep sometimes without his "loopy meds". We are happy about this too. She is concerned with his belly pain and his "bulge" along with the continuous leaking.

The surgeon didn't think a whole lot about the bulge until he had Eliah stand up...when he did the bulge appeared bigger and when he pushed on it, fluid came out of his stoma. We will be getting a CT scan tomorrow morning with contrast. Hopefully this will show whether or not he is still leaking into his abdominal cavity as well as what this bulge is doing. Please just pray for answers.

His skin breakdown is pretty much the same. He seems more uncomfortable (belly) in general when he gets up from the floor or when he is walking about.

Gotta go. The scan is scheduled for 11am, but we have to be there at 9am for them to begin giving him the contrast.

Hugs,
Chelle

Tuesday, September 5, 2006 11:07 PM CDT

I sound like a broken record, but he is still leaking, bleeding, and getting his dressings changed way too often. His skin breakdown continues and he is really uncomfortable. He seems to be weaker either from everything that has happened or because of pain that he is having. Today he spent much of the day complaining of pain or walking kind of "crumped"...protective of his belly. We have been doing what we were told to do *hoping* that it would make a difference and it doesn't seem to have done much. He still has the bulge in his belly too. On Saturday his incision opened up...just a small hole, but it seems like this should not be happening 5 weeks after the second surgery. I have a laundry list of things to talk to the doc about on Thursday and if I don't get better answers this time around, I will be seeking advice elsewhere. Something has to change. Sorry to sound so down trodden, but it is how I am feeling about his stuff right now.

On a lighter note...he has been able to sleep without the Chloral Hydrate quite a bit since coming home. This is one positive thing that came of this. We have not discontinued it altogether just yet, but the decrease in the frequency of the med is delightful.

Hugs,
Chelle

Thursday, August 31, 2006 10:55 PM CDT

Same stuff...different day. Eliah's belly is still leaking and he still has pain. He has a fair amount of skin breakdown (has lost the first layer of skin around his stoma). We went and saw a stoma therapist last week and have been treating with Kaltastat, Nystatin powder and a product called Ilex. It seems to be helping some. At least it has kept the skin breakdown from getting worse. The leaking is worse now than it has been though which is quite frustrating. The bulge is still there in his belly and it (belly) is so swollen...before surgery he had to wear a belt much of the time, now he only has 2 pairs of pants that he can wear.

We went to see his ped the other day and she agrees with us that the bulge is concerning and that if the surgeon doesn't scan it, then she will order it to be done. She has some concern that it could possibly be a hernia in the abdominal wall. She also doesn't like the amount of leaking that we are having to deal with and would like to see the g-tube closed and have a j put in. Eliah also has a granuloma that we are treating with Kenalog cream per the doctor's orders. It seems to be helping.

He is having bloody drainage too. Some of it could be from the granuloma, but I am wondering if it is all from there. Who knows. All I know is that we are all tired of dealing with it...and would just like to have a better more permanent solution. As it stands now, the dressings need changed approx. every 10 minutes. Sigh.

I'm tired and falling asleep. I will type more later.

Hugs,
Chelle

Thursday, August 24, 2006 5:55 AM CDT

Eliah's belly is still leaking...it has increased to where we are changing the dressings every 10-20 minutes. We went to the surgeon (the one standing in for ours in his absence), and the only thing he said that we could do about the leakage if it got out of control other than what we are already doing by changing the dressings frequently is to admit him again, take the tube out for 12-24 hours and allow the stoma to shrink...the risk with this is that his stoma could close down too much and we would lose the site altogether. This would not be a good thing either. So, what to do?? The leakage is tearing up the skin on the outside of his belly. We are using Gentian Violet, Cavilon barrier wipes, and Aquaphor and Maalox to try and help combat the stomach acids. Obviously it is painful for him each time we change it. Something, either his stomach (inside) or the tract of his stoma is bleeding too, presumably from the acid?

The bulge is still there too and it seems like his belly is a little "puffier" otherwise, but yet still soft. We are watching this closely, though the surgeon said (again the substitute one) that he "wouldn't worry about it". Well, from this note you can tell that I am worried about it. He also said that it could just be fatty tissue. My question to that was, "where was the fatty tissue before, and why did it appear all of a sudden?" A bulge doesn't just appear out of nowhere without reason for concern. I will be glad when our own surgeon comes back. We have an appt on the 7th of Sept. and I will have a LOT of questions for him then.

Other than his belly, he seems to be doing pretty well. He is fighting with his siblings, which some would say is a sign of good health. lol Bringing everyone back together in our home has been a challenge, but things are improving each day. Yesterday was our first day of school for all of the kids. Melody went back to the public school. Caleb, Eliah, and Julie are all homeschooling. Caleb's first day went very well...praying that continues the whole year through. Eliah and Julie have only a little tolerance for sitting still, so I plan on doing school in several short segments. Though it is too early to register Julie for school yet, she and Eliah are doing Kindergarten at the same time because, cognitively, they are in about the same place and I figure they will be good for eachother in that way.

I should go for now.

Chelle

Sunday, August 20, 2006 10:30 PM CDT

Okay...really bad journal updater...sorry about that. Things have been so busy since we got home and I have just kind of been in a "place". The emotions had to be locked away pretty much the whole time that we were in the hospital and now that we are out and in a safe place to "feel" again, I am afriad that if I start, I will not be able to stop. Do you know what I mean?

Anyway...Eliah is doing so much better than he was in the hospital. I think just being home adds a lot to that...not being poked and prodded all the time. He still complains of daily of belly pain, which we are treating with meds. Tonight we noticed a new thing...over the past couple of days I have noticed that his pants don't fit like they did before our month long visit...he didn't gain weight in there...in fact he lost some, but his pants are much tighter. I wondered if it was either post operative swelling (kind of far out for that still I would think), or if it could be because of moving things around in there? Who knows. The other thing that I mentioned we found tonight is that he has a "bulge" to the right of his belly button...it sticks out a good bit and is concerning. I will be calling first thing in the morning to ask about that. His stoma has been leaking like a seive, but thanks to some dear friends of ours, it will now leak into a bag rather than all over his skin. We were having to change his tummy dressings every 20-30 minutes and his skin was beginning to break down. His g-tube is on an open drain and that has been putting out quite a bit. We have an appt to see the surgeon again in 3 weeks...hopefully either things can wait until he gets back or maybe we can see one of his colleagues.

The adjustment of having everyone back home has been intense. It will take time for things to get "back to normal". This week we will start school...Melody is going back to the public high school and Caleb and the little kids will be starting homeschool. Caleb in the 7th grade and both of the little kids will do Kindergarten. Julie is only 3 and Eliah is 6, but cognitively they are pretty closely matched.

I will try to be better about updating. Thank you so much for all of the prayers and help with meals and other things around here that so many people have been providing.

Love,
Chelle

Thursday, August 17, 2006 6:45 AM CDT

VERY quick note to let you know that WE ARE FINALLY HOME!!! I will write more later. Last night was a tired late night and this morning came too early, but at least it is here in our own house and not being woken up by "the white coats". I will try to update later today.

Love,
Chelle

Friday, August 11, 2006 7:32 AM CDT

This is actually a message from the 4th of August. I didn't have the computer for several days, so I had to write it after the fact.

Eliah is doing pretty well right now. The surgeon came in last night at 10 (after saying he would be here at 3...grrr) and removed the steri-strips from his long incision. The scar actually doesn't look all that bad. His belly button isn't quite like it used to be, but hey, that's the way things go. His g-tube site is a mess and at least for now, that is our biggest problem. The other day the surgeon came to the door in the room and asked to speak to me in the hall...said that he didn't want to upset Eliah. Okay...when a doc says something like that, you know that what is to follow isn't good. When I got out there he talked about the possibility of having to operate again. He said that his white counts, hgB, BP, heartrate...the numbers weren't getting back to what they should be and that made them think that there was another problem. He talked about, if they found leaking near his site in the esophagus that they would probably have to do a "spit fistula" which means that they separate the esophagus part way down and bring it out through a hole in the neck (like an ostomy) to allow his saliva to drain out without going past his surgical site. Later after the site had time to heal, they would go back and put it back together. The other thing that he said was that if the leaking was coming from around the g-tube site that he would have to go in and close the current g-tube site and try to find a new one. This would be a challenge because he has had so much stuff done to his tummy (2 drain holes, 1 g-tube hole, and one large incision) and his tummy is so little.

They ended up doing a swallow study and esophogram which, like the first one, didn�t show a whole lot. It didn�t show any leaks. One might think that would be a comforting thing to find out, but I still had concerns since the first study didn�t show leaks either, but there were some. Later they decided to put contrast (that they had colored red) into his tummy and instantly it leaked into the hemavac, showing a definite leak from his g-tube site/stomach. After seeing this, the surgeon decided NOT do another surgery right now but rather to thread the j-tube through the g for now to allow us to begin transitioning from TPN back to j-tube feeds (into his intestines). We are going to go back (as outpatient) to do another study to see if his stomach heals up�if not, then the surgeon will revise the g-tube site and place a permanent j-tube in his intestines. Actually this would be a better option if the j would need to be a long term solution because we wouldn�t have to go through the painful and traumatic procedure of threading the j through the g each time�it would just be there and be a fixture like his g-button has been.

We have had issues with 2 of our nurses not doing proper line care so I have had to go to the nursing supervisor to deal with this. Pray for no infections in his line as a result of this.

Last night (the 11th of Aug) I was retaping his j-tube portion of the g/j and it came out. This was really hard on him and me, but an x-ray showed that things were fine...it had only come out about an inch so we were able to put it back in without having to go through a huge ordeal.

Two days ago I had promised Eliah that I would bring him sand (I got to go home for a couple of hours to do my laundry) but when I got to Home Depot I realized that I had left my wallet and money at the hospital. I talked to the manager about it and explained the situation and out of the kindness of his heart, he gave me a bag of sand. Please pray heaps of blessings on him for this kindness...it made Eliah's day. I plan on doing something nice (repay him as well as bake him cookies or something) for this sweet man, after we get home, to thank him for his generosity.

I need to go for now. We are currently getting his infusion done, while in house, and have had no problems from it. Yea. Please pray that this would continue to be the case. We *should* be getting to go home sometime next week as long as nothing else happens. We are praying that all goes well for the rest of our stay for many reasons...one of which, the surgeon left town again for 2 weeks and we don't want anyone else handling his care.

Please pray for our friends Kyle, Izzy, and Taylor. They all have many medical issues that need intense prayer all the time. Pray specifically for Taylor right now that her incision would not become infected as the site was compromised last night.

Love,
Chelle

Wednesday, August 9, 2006 11:07 PM CDT

Hi. I know it has been a long time since I last posted, but the computer has been MIA for several days as hubby needed to use it. I begged shamelessly and he brought it back, so I will try to update tomorrow with all that has been going on with us. We are still in the hospital and will be here for another week yet.

Hugs for now. I will post soon.

Chelle

Friday, August 4, 2006 6:56 AM CDT

Wow...I'm sorry that I let so many days get away from me without updating.

Eliah is doing better after the second surgery than he did after the first, but we still have concerns over fever, pain, hgB and WBC counts.

The things that are better this time around: He has been able to keep his oxygen saturation levels up without needing additional O2. He also has felt better and looked better than the first time around. I really feel that after the first surgery, he never really started to get all that much better...I think that he started leaking and showing signs of infection within a couple of days, but that the signs just weren't as obvious as they could have been. His tummy, this time around, is still distended, but less than the first time. He actually played with a couple of toys over the past several days. He walked quite a long distance yesterday through the hallways. On one of our walks yesterday (have to take at least 3 daily) we got to meet Lassie and Eliah got his picture taken with her. On another walk, we went down to the playroom and played BINGO. Eliah won two rounds and received a HUGE Coca-Cola mug/thermos and an outfit for his Snoopy dog, but he wanted to put it on Amos the duck. I will have to post photos later.

I mentioned his fevers...they have been spiking daily anywhere from the 102's - 103's. He has also had high WBC counts. The two of those show that his body is trying to fight something off, but we still don't know what. He has been having pain in his left side, which they did another CT to *hopefully* show what is going on. They have done blood and urine cultures but haven't gotten all of the results back on those.

We had a really bad experience with one of the nurses night before last. I spoke with the nurse manager (at least I think that is her title) and she said that she would deal with the situation and that she would move the nurse to a different part of the floor until we go home. I felt good about the way that the hospital handled this...I felt very listened to and like something would be done about it.

Eliah's new g-tube stoma is huge and leaking terribly. Yesterday the tube even fell out. One thing that will probably have to happen is that at least for now, he will be receiving a much larger tube. Later we can probably work at shrinking it down.

The NG tube was removed 2 days ago, so his nose is free again.

I will update more later. Just wanted to give you some information. Again, I'm sorry I've been so bad about posting.

Hugs,
Chelle

Sunday, July 30, 2006 6:21 PM CDT

Finally, a chance to update and a computer to do it on. We just got back up to 4T today, but are now on the North side. When I last wrote they were debating whether to put in drains in interventional radiology or to go ahead with surgery. Dr. G said that he didn't feel comfortable just putting in drains when he didn't know the source of the abscesses. So by approx. 11:45am on Friday the 28th Eliah was in surgery again (surgery lasted for about 4 hours). When they went in they found saliva in his abdominal cavity (obviously this is the WRONG location for that) so they had Dr. B come and place a tube to blow some air into his esophagus to find out where the holes/leaks were. They saw them (one hole in the esophagus and one in the stomach from the previous surgery...where things didn't hold) and sewed them shut with strong sutures and used "lots" of surgical glue. Next they cleaned out the saliva and infection. Then revised the g-tube. Last they had to fix the intestines. They had herniated and were partially obstructed. Praise God for the wisdom that the doctor had in moving ahead with the surgery. If it had not been for that decision there very well could have been permanent damage. Before surgery they had talked about having to possibly do an ostomy, but again, they didn't have to go this route.

He spent two days and nights in the PICU where he received excellent care. They had to give tylenol suppositories, keep his room at 64 degrees, have ice water rags on his head, and have him on the cooling blanket at a very cold setting just to keep his temp under control. He is still struggling with fevers and has to be kept on the cooling blanket to keep his temperature down, but hopefully soon this will also resolve. Overall, he seems to be doing much better after this second surgery than he did after the first one. The first time around he had trouble with his O2 much of the time and kept hanging out at around 84-85, this time his sats have been ranging from 94-100 which is WONDERFUL. His heart rate, respirations, and blood pressure have been a little on the high side, but not terribly concerning for now. All of the doctors agree that they are not going to take anything for granted with Eliah after this last experience.

His white blood cell count before surgery was 24,000 and it has now gone up to 30,000...not sure what is up with that or if that is okay...I will be asking more questions about that in the morning. Dr. T will be returning from being "camp doc" and has quite a lot to come back to with us.

We will be in here for two more weeks...hopefully no longer.

Please pray for healing for all of the surgical sites as well as for his sensory system...it is WAY overloaded from all of the poking and prodding that he has had done. He just received his first insulin shot too...this is *hopefully* only going to be a post surgery thing while he is on TPN and recovering from all of the trauma that his body has been through.

He will be on abx for 10 days to a month to combat any lingering infection and keep anything new from starting.

I think that is it for now. Oh...something sweet...there was a 14 year old boy across the hall from Eliah and one day last week he sent over some of his balloons...he was being discharged and had heard Eliah crying and had been watching him...he said that he felt for Eliah and all that he was going through...that he had been through some of the same stuff and he hoped that he would enjoy the balloons. I have been overwhelmed by God's goodness showing through in some of the most touching ways during this time.

God bless. Please keep our friend Kyle in your prayers...he has had some "stuff" going on that we are praying doesn't turn into anything bad.

Love,
Chelle

Thursday, July 27, 2006 10:10 PM CDT

We had two abdominal x-rays, one chest x-ray, two CT's (and a partridge in a pear tree) done today. The second CT showed two abscesses in his abdomen...the one is 10cm x 6cm, and the second one is 6cm X 7cm. They will go in tomorrow either in surgery or in interventional radiology to put in two more drains. I will let you know, when we find out, what is going on. Please just pray. He is in a lot of pain.

Love,
Chelle

Thursday, July 27, 2006 6:17 AM CDT

The white coats just came through and have more questions than answers. They say that his white blood cell count is high (24,000)about double what it should be, his pH is high, and his protein is questionable. One thing that they did confirm (yesterday) is that he has pancreatitis, so we will be in here longer...how long we do not know. They did more labs yesterday and will probably do more today to see what his numbers are. As of early yesterday his Amylase was 309 and normal is less than 30, and his lipase was 906 and normal for that is 120 or less. I am hoping that by the time Dr. T comes back, more answers will be available. For now it looks like we will most likely be in here next week. If we have to be, I am hoping that we can get his infusion done during that time too.

They started giving him dilaudid for the pain in his belly. It seems to do quite a bit more than anything else has. I'm not real excited about starting him on the med, but I am thrilled to see him have some relief from the pain.

The docs just came by again and said that he will be getting another CT done today with contrast. He had some more x-rays done just a little bit ago...and abdominal series and chest film. They also x-rayed Amos the Duck for the 2nd time. Now we have a fancy envelope to keep Amos' x-rays in. (Eliah's excited about that).

I'll update more later.

Love,
Chelle

Wednesday, July 26, 2006 6:32 AM CDT

Okay...this is bugging me. Twice I've had messages typed to post and for whatever reason it isn't working!! I typed one with all sorts of info about the past couple of days in it and it disappeared somewhere into cyberspace...I will try and re-do it today.

In short, I feel like we have been held captive in a small boat on a long and tedious tour through hell. This week has been terrible. If it would just have been a "normal" surgery, it would have been no big deal, but we have had throwing up since last Tuesday or Wednesday, inconsolable pain, distention in his belly and bowels, endless testing, diarrhea, yadda, yadda...

Last week we were told that we would get rid of the JP drainage tube on Monday and that the j-tube would be placed on Tuesday. Well they decided to do the ol' switch a roo and called us down on Monday for the j-tube...Eliah saw the room that we were heading for (interventional radiology)and started to panic, then when he saw who was inside the room (the same doc that, not so gently, placed the last g/j button) he started screaming and crying. The doc tried to place the tube, but couldn't get it to go in the right direction without causing great pain to Eliah, so he said that we would do it the following day with sedation. Nothing ever happened with the JP drain that day.

The following day they came down to the room at 7:20am and said that they would be here to take us down for his procedure at 7:30am. Gotta love the advanced warning. When we got down to interventional radiology and got Eliah situated I asked if I could re-access his port (has to be done once a week)while he was under. The doc agreed. I just didn't want to have to put him through anything else. It was my understanding too that we would get the JP out during that time, but that didn't happen. The tube placement went well, but the decision to make him loopy was a good one. I talked to the doc about Eliah's past experience with him and why he was afraid of him...he felt bad about it and apologized, so we're good...I hope that Eliah will be soon too.

He is still having a lot of belly pain and throwing up...still on the TPN and will be until they can get to the bottom of the pain and distention. They have some concerns about possible pancreatitis which would require him to stay on TPN for a longer period of time. They are also testing him for c-diff (an illness caused by antibiotics), so for now we are in isolation. Delightful.

We have to go down again today for additional x-rays and they are going to do more labs as well.

I don't know if I am forgetting anything. I will write later if I have. Please pray...

Hugs,
Chelle

Monday, July 24, 2006 11:43 PM CDT

I have made many attempts to update this page tonight and lost several entries, so now I am irritated and tired and not about to type it all over again. I will update more tomorrow. In short...he has to have 2 procedures done where he will be sedated. Please keep this in prayer. I will let you know how things go.

Chelle

Saturday, July 22, 2006 11:14 PM CDT

I'm sorry that I didn't get to posting yesterday. To be honest, so much went on today that I don't even remember yesterday.

Eliah has been having a lot of belly pain and trouble with fevers. This afternoon around 2:30pm he had a temp of 101.8, then about an hour later it had crept up to 103.8...the nurses put him on a cooling blanket, gave him a tylenol suppository, and some IV toradol...his temp then went up to 104.8! They did cultures, CBC, and a CT scan to try and get to the bottom of the fevers. All of the tests came back good. In some ways that is wonderful news to hear, as the possibilities of what it could have meant were not good, but on the other hand, it didn't help us to get any answers.

His blood sugars were kind of high and they had even talked about putting him on insulin, but they are now coming down so I am going to ask them to hold off.

I'm tired and need to go for now. I will try to write more later.

Hugs,

Chelle

Friday, July 21, 2006 10:53 PM CDT

Much has gone on today, but I am so tired. I will update some time tomorow. Tonight started out rough and I don't see it getting any better.

Chelle

Thursday, July 20, 2006 9:55 PM CDT

Okay...when I wrote last night I didn't realize that it was really this morning (12 0'something). After writing that entry and getting to bed, the night became very long...Eliah was up most of the night...until 4:30am crying in pain and gagging and wretching...looking like he was going to barf up a lung. The drainage tube has been leaking a lot too (around it, not through it like it is supposed to do). He needed to be on O2 again through the night as his sats kept hovering around 86-87. The pain team came around today and said that they are available to us 24 hours a day, 7 days a week if we need them...that Eliah shouldn't have to have another night like that. They are like angels whose wings are hidden under their lab coats. Praise God for their compassion on the little ones.

Today was much of the same...he was gagging and wretching (dry heaves) throughout the day...about every 5 minutes. We felt that the cause (at least the main one) was because of the NG tube. He is still gagging and wretching a little tonight though and the tube is long gone. His IV was starting to go bad today, so they went ahead and pulled it. There has been some talk of starting another one b/c of some meds that he is on that are not compatible with TPN but we are going to try and avoid that like the plague. The TPN is being given through his port. Eliah is NOT an easy stick for an IV. They also had to pull his foley catheter because he was peeing around it and in great pain. His lungs are junky and crackly and his fevers are spiking again today due to atelectasis.

He has done much better today with walking around...we even took a walk to the play room and back. Tomorrow we will try to take a longer walk. With each day we see improvement in his ability to get around.

Aunt Kelly came to the hospital and decorated the room to make it more "Eliah friendly" and to visit. We had several other visitors today...Kyle, Donna, and Conrad, and Alicia, Aurora, Ambrosia, and Avalon. And our dear sweet homecare friends Angel, and Cassandra.

I need to go for now. If I forgot anyting, I will update again tomorrow.

Hugs,
Chelle

Thursday, July 20, 2006 0:09 AM CDT

Last night was hard as he was up a lot gagging and wretching from the ng tube. We asked about getting this out, but they said not until Monday after the swallow study. He also struggled with a temp of 103.8 axillary. What this means in layman's terms is an "under the arm" temp. When it is taken that way you add a degree to see what the "actual" temp is. Eliah's temperature is 2 degrees lower than the average person, so for him to reach 103.8, add the one degree for the axillary temp and 2 degrees for the difference in his usual body temp and that gives us a temp of 106.8. So obviously we had to give him stuff to bring that down. Today he has also had some trouble keeping his oxygen saturation up and has had to receive oxygen via nasal cannula...that made him as mad as a hornet. We had to get him up and moving today too...he wasn't too thrilled with that. He had to sit up twice in a chair and once he had to try walking...he took 6 little mouse size steps with MUCH assistance, but he did it.
He started his TPN and lipids today.

They said that the chest film did show atelectasis (can lead to pneumonia) so we are getting him up to sitting and standing to prevent further problems.

I think that's it for now...I am really tired and will update later.

Love,
chelle

Tuesday, July 18, 2006 10:20 PM CDT

Eliah's surgery was a success. Thank you all for your treasured prayers. Everyone has been wonderful today...all of the nurses (this morning) were playful with Eliah, and since his surgery have all been so sweet and gentle with him...it has been such a blessing.

I must admit that this morning and in the days leading up to this surgery, I had really been struggling with it...afraid that things weren't going to go well...just that yucky feeling in the pit of my stomach. I kept giving it back to God and He saw us all through it.

I was allowed to go back with Eliah into the induction room (where they put him to sleep) which was good because he was had been sad and worried. I think it helped having me there.

The first procedure (placing the tube and guide wire) began around 12:45pm and took approx. 20 minutes. They did this so that they could clearly see what they were dealing with. The esophagus bleeds a lot and is not a good place to go on a fishing expedition. During the second procedure they ended up not having to take the nissen down and were able to cut out the fistula and basically "patch it" with other tissue so that it won't form again. They did end up having to move the g-tube, but only on the inside. The stoma, on the outside, is in the same place. Really big good thing. Surgery was finished at about 4:45pm. They have a drainage tube in his belly and will remove this next Monday. Then next Tuesday they will place the j portion of his g/j tube as he will not be able to feed into his stomach for a while yet...they said probably a month before we will try that. He cleaned up the scar on Eliah's belly...it had been so wide because of being opened so many times and now it is just this very skinny scar...much better for him. So obviously a longer stay than we had banked on, but better circumstances. Because of not being able to feed by g or j just yet, he will be on TPN for a little while. Probably only a week...until we get his j tube feeds running again.

I will be trying to attach some photos from our day...before surgery and just a little while ago. Hopefully I will figure it out. Thank you again for your prayers.

Love,
Chelle

Monday, July 17, 2006 9:24 PM CDT

Just a quick note tonight...Eliah's surgery is scheduled for noon tomorrow (the 18th). I will be updating this page as soon as I can after surgery...either on the hospital computer or on Scott's. Thank you for being faithful to pray.

Jeffrey's funeral was today. Please continue to lift his family up as the days and weeks ahead will be hard. They know that Jeffrey is in heaven with Jesus, but their arms ache to hold him still.

Love,
Chelle

Wednesday, July 12, 2006 8:03 PM CDT

We received a very sad call this morning...our dear friend Jeffrey, that we have been asking folks to pray for, passed away this morning at 7am. We are glad for him that his suffering is over and that he got to go be with Jesus, but we miss him very much already and we have so much sadness over his death. His mother, who has been such a strong prayer warrior for him and has been by his side every step of the way, really needs your prayers tonight and for the coming weeks and years. Jeffrey had a brain tumor and was 12 years old.

Now about Eliah...the abx that the doc had him on got rid of the "dead animal" smell that he had. Unfortunately he has been having some pretty bad reactions each time it is administered, so we have had to stop it. It was causing him to gag, wretch, and have "dry" heaves. He was waking up several times in the night getting sick...just overall yucky.

I have update some pictures. As soon as I find the disk, I will put some pictures up from his birthday (back in May). Sorry I haven't done that before. The ones on the photo page now are from the Adventures For Wish Kids trip to Kings Island and from the Miracle League baseball team.

hugs,
Chelle

Monday, July 10, 2006 11:23 PM CDT

I have had several people say that they have been looking for an update on Eliah...I'm sorry to be so lax about writing...things have been busy, but that is such a lame excuse.

We visited with our cat (who is now residing with our friend) a couple of weeks ago. The kids were overjoyed to visit with her. She, being a cat, could have cared less. *grins*

We had plans to watch a parade and see fireworks for the 4th of July, but the weather didn't cooperate so we spent the day with family and friends (mostly inside). Then we went, on the 6th of July, to King's Island with Adventures for Wish Kids. Everyone had a really good time there. We did stuff together (the whole family) for the first couple of hours and then the big kids and Scott split off to go on the "throw up" rides while the little kids and I stayed in "babyland". Eliah got to ride on the swing merry go round thing (don't really know how to describe it), on a little train ride, and on the regular merry-go-round. Julie wasn't able to go on the swing things because she was a wee bit too short for it. Then we went to ride on the real train...an actual steam engine (we got to watch them fill it with water from the water tower...they do that once every 2 hours)...after riding it the first time Eliah decided that was where we should spend the rest of our day, so the little kids and I rode it E-I-G-H-T times! The girl that was the tour guide allowed Eliah (and Julie) to say, "ALL ABOARD" on the intercom. He was thrilled. He also got to have his picture taken on the engine with two of the engineers as well as in front of the train. They explained to him about different parts of the train...he was thrilled.

Eliah and Julie both got to fly with their daddy in the little plane this past weekend...it was Julie's first time and Eliah's second.

Medical stuff: Approximately 6 weeks ago we began noticing that Eliah smelled like a dead animal...pretty gross, but honestly that was how he smelled. I didn't want to bother the doctor with whiny parent stuff so I didn't say anything for a while, but finally it had gotten so bad that I had to say something. I'm glad now that I did because it was due to bacterial overgrowth in his intestines...she put him on abx and the stink went away!! Yeah! We (Scott and I) also noticed that his BM's aren't as horriffic either...before, when he would have a BM we could smell it from 2 rooms away, but now it is just like anyone else. I know that might be more information than some might have wanted to know, but that is our life.

We are getting ready for surgery next week. Praying that all goes well.

I'm going to close for now. I will write more later.

Hugs,
Chelle

Sunday, June 25, 2006 5:59 PM CDT

We had our appt with Dr. T last week and they (he and Dr. B)are going to do surgery on the 18th of July. The information that I shared with Dr. T (that I mentioned in the last journal entry) was from the Mayo clinic and stated that "in 24 years of experience and 37,808 endoscopies" that they had only seen one other case of an esophagogastric fistula (the extra "pathway" that he has). Neither of us were very excited about the "rare" aspect of this crazy thing, but he basically came to the same conclusion as Mayo did...that they need to cut it out. They will put an endoscope down his throat so that they have a camera in there to see things well. Then they will open up his belly again, undo the current nissen, go above the nissen to cut out the fistula, sew the esophagus back together, redo the nissen, and possibly move the g-tube. We are *praying* that we can keep the current g-tube site so that there will be less to heal, but they will do what is best at the time. Just pray, pray, pray. Also, we will be in for a minimum of 4-5 days...best case scenario, we will get out of there on Saturday or Sunday, which will put 8-9 days before his next Pamidronate infusion. Normally, this wouldn't be a problem, but the last time (last year) he had surgery with a 10 day span before his infusion, he had seizures. We would really like to avoid these this time around. Our lives would be just fine if we could rid ourselves of that much excitement.

On a good note...per the recommendation of a dear friend we learned that there was a possibility of doing Eliah's infusions here at home. I called and spoke with the nephrologists office about it and after some checking, they are going to allow us to try it. As long as Eliah cooperates and doesn't do anything funky, we should be able to do this. They will have all of the monitors that we need to keep tabs on things so that we know if he starts having any trouble. Like I said before...normally I wouldn't worry about it, but because of surgery coming so shortly before this, I am a little anxious about how things will go. Maybe anxious isn't the right word...prayerful is better.

Eliah has still be having belly pain just about every day and occasionally he has small amounts of blood in his drainage bag, but otherwise seems to be doing well.

He had his last game for the Miracle League and thoroughly enjoyed every moment that he got to play. He received a trophy and hasn't put it down yet. He is very protective of it and tells everyone that they can look but NOT touch. He hit the ball pretty good one of the times and said, "I killed the ball". It was so cute. I cannot say enough good about all that the Miracle League does for these kids and the families.

Caleb graduated from his CAP (Civil Air Patrol) encampment this weekend. He worked hard, but enjoyed all that he did. His roommate for the weekend was a kid with medical issues that had previously had a g-tube. That made for in instant "connection" for them...they plan on keeping in touch.

Melody went to an outdoor music festival (in the rainy/tornado season) and in spite of the rain had a WONDERFUL time.

We will all go tomorrow to visit our cat Emma. She went, approximately a year ago, to live with another family in our church. With everything else going on here, having an indoor pet was getting to be too much. We all miss her terribly and are looking forward to seeing her.

After we finalize the disc in our camera, I will have Scott help me post new photos.

Hugs,
Chelle

Wednesday, June 14, 2006 9:24 PM CDT

I can't believe the week went by so quickly. It has been busy. We will be meeting with the surgeon tomorrow to discuss what to do about the fistula. Please pray for wisdom. I have been doing some research and plan on taking the information that I have found to our appt to ask if it would be helpful in this situation.

Eliah has been having belly pain quite a bit, but is still playing and tormenting his sisters and brother. We also had a rough start to the day yesterday...as Eliah's nurse was giving his morning meds, the one med that is a bit like trying to push a forth teaspoon of sand through a coffee straw, got stuck. The nurse tried to clear the tube, I tried, and then finally Scott tried...as he was pushing, we heard a small "pop" and Eliah acted as if that "pop" was very uncomfortable inside of him. After this, anything that we tried to push through the "j" portion of his tube came right back out in his drainage bag...so off to the hospital we went to get a new tube. They were actually pretty quick about getting to us, but the doctor that we had wasn't very compassionate and not very cooperative in answering our questions.

I'm tired, so I am going to close for now. Please remember to pray for Izzy...that her recovery would be quick, Jeffrey...that his mom would be able to get hospice to cooperate and NOT take over, and Kyle...that his infection would clear up soon so that he could go home from the hospital.

Hugs,
Chelle

Saturday, June 10, 2006 7:37 AM CDT

Hi. I'm sorry that it has been such a long time since I updated...the bleeding in Eliah's tummy has stopped from what we can see. Thank you for your prayers concerning this. We have an appt with the surgeon next week to see what he suggests to do from here. I am guessing that he will take a "wait and see" approach, but who knows. The biopsies showed that things were fine though she was not able to get the endoscope down into the fistula to get a sample there, so other than bloody stuff that she could see, we don't have much information on it.

Eliah is supposed to have his first baseball game with the Miracle League today, but because of the weather, we aren't certain if it will be called off or not. If it isn't, we will try to post some pictures later today...if it is, we will post after his next game.

HUGE PRAISE REPORT...a friend that we have been praying for for a long time has just had a successful kidney transplant!! She had a multi-viseral (sp) transplant a while back, but then suffered damage to her kidneys afterward and had to have another one. If you would please keep her in your prayers...her name is Izzy...that her healing would be complete and that she could start being able to do "healthy kid" stuff. Also please remember to pray for her donor family...they are mourning the loss of their 12 year old daughter that was able to bless Izzy with the gift of life.

Hugs,
Chelle

Tuesday, May 30, 2006 10:11 PM CDT

Today began with getting ready for Eliah's procedure. He complained of belly pain and his tummy was draining blood(through the g-tube drainage bag). Right before we left he threw up blood. Off to the hospital we went. As we were sitting in the waiting room his doc came through and asked how things were going. I said that things were pretty much fine other than the contents in the drain bag. She said that it was a good thing that we were getting this done today...she was anxious to see what was at the root of that. We then went into the room for them to weigh him and do vitals...he again threw up blood. We waited a bit then went into surgery. Afterwards the doc came out and said that she didn't find what she had expected to in there...she said that the esophagus looked pretty good for the most part, but that the area where the fistula is was bleeding and looked like fresh meat. He had new blood coming out of there and old blood in his stomach. She also said that she saw a small white spot in his stomach near the duodenum, but that she didn't think it was an ulcer. She wasn't sure what it was but didn't seem too concerned about that for now. She said that she would be consulting with the surgeon (Dr. T) about what to do concerning the fistula.

She took some biopsies, so hopefully those will show what it is that they need to show. She said that the fistula was too narrow for her to really get down there with the endoscope, so I don't know that we will have much factual information from that area in particular...other than the obvious blood.

I don't know how to ask you to pray...just as God leads I guess. He knows what is going on and what needs to be done. Just wanted to let you know and ask you to stand with us.

Do pray for his spirit...he was so disheartened today...he kept closing his eyes, trying to make the world go away...not in sleep, just in wanting things to go away. He cried a lot, I don't know if it was from pain, fear, maybe a little bit of everything. Up until bedtime meds he was just very sad. His esophagus/tummy is still bleeding tonight.

Hugs,
Chelle

Saturday, May 27, 2006 10:11 PM CDT

My sweet little Eliah turned 6 years old this past Tuesday!! In some ways it is so hard to believe that it could possibly be that long ago that he was entrusted to our care by our loving Heavenly Father! What a wonderful 6 years it has been.

It has also been a challenging and long 6 years, filled with medical procedures, medications, tests, lots of yucky stuff. But we have endured and are stronger because of it. We have learned so much about faith, and what it means to trust our Heavenly Father to walk with us through the regular times and to carry us through the really tough ones. We have learned to live more in the moment and to appreciate each and every day as they are all gifts...not to be taken for granted, but to be cherished.

Eliah had a wonderful birthday! He shared it with some of his best friends and they all had a delightful time riding horses and a cart pulled by a miniature horse. The kids were even allowed to "drive" the cart...you should have heard the squeals and seen the smiles!! It was great! I will post some of the photos soon.

Eliah's surgery (EGD) is rescheduled for the 30th of May which is this coming Tuesday. I will try to post about that later in the evening on Tuesday barring any chaos in my household (*slight bit of laughter*).

We had his 6 year old appt with the ped last Thursday and she wants to schedule 3 different appts...one with urology (because of some possible issues with physical growth/maturity), one with opthamology (because of mito), and a sleep study to see what to do about his inability to sleep without meds. She has some concerns about him staying on the Chloral Hydrate. She would like to know more about WHY he isn't able to sleep, whether it is due to apnea, reflux or possibly other reasons.

We had our appt with genetics and after Dr. A consulted with the other docs, they concluded that another muscle biopsy isn't necessary. Though the results of the original biopsy don't seem to be very complete, they are not disputing the findings of mito complex 1 and another test would only be an academic exercise with no additional benefit. Dr. A is putting him on Carnitor and Coenzyme Q10, so please pray that we are able to figure out funding as these are very pricey.

Our appt with cardio was great...they did a repeat EKG and an echocardiogram and both showed normal results!! We will be followed by them only every 3 years (YEAH!) unless we have additional concerns.

Hugs,
Chelle

Wednesday, May 17, 2006 11:31 PM CDT

This week we were supposed to go in for the biopsies, but the procedure ended up getting canceled because there was a mix up about Eliah's meds. The nurse thought that she had said to stop it 48 hours prior to surgery, I didn't remember her saying anything. Obviously there was some confusion somewhere, so it is rescheduled for the 30th of May.

Tonight Eliah woke up screaming that he couldn't breathe. He said it was because of stuff coming up. After he settled down a little he was doing better, but this is still concerning. I will be asking someone about it tomorrow.

We had an appt with genetics this week. Dr. A is still not satisfied with the answers that we have about the mito stuff...she is talking with some other docs to see if we should get another muscle biopsy done to get more information. The more we know, the better we will be able to deal with this. I will have to let you know when we find out more.

We have an appt with cardio this Friday. I will try to post about our appt after we get home.

That's it for now. Please pray for our friends Kyle, Izzy, and Jeffrey...they are all struggling with some really hard stuff.

Love,
Chelle

Monday, May 8, 2006 5:55 AM CDT

Not much information this time (medically speaking) except that we have his EGD (esophageal biopsies) scheduled for the 16th of this month.

Eliah needs prayer for emotional stuff. Over the last couple of months he has had to say good-bye to his speech therapist (she got a new job), his nurse Holly (died), we found out that we will be losing Amanda (home health aide that has practically become part of our family over the past 15 months...because Medicaid says that Eliah needs an RN), several of our dear friends from church are leaving...one because of a new job and because God has moved her to do more missonary work, and the others because of job and something to do with visa status. I don't think I have forgotten anybody. Regardless of why he has had to say good-bye, it has been really hard on him and he is feeling sad about it all. With each time this has happened, we have explained why to help him understand, but he still feels sad. This weekend he said that he had been talking to God and that he wanted to send a card to nurse Holly up in heaven. We went and got two balloons (one symbolizing him and the other nurse Holly) and tied them together. Then he made a card, which we also tied to the balloons. We went out into the side yard and released them and watched until we couldn't see them anymore. As we walked back into the house, he asked if nurse Holly had gotten them yet...I told him that I thought she did. He then told me that he hoped that she would write back to him...that God would help her. (tears) He also said (regarding people leaving) that he "wished nurse Holly could have stayed longer" and that "I wish Kelly (friend that is leaving b/c of missions/job stuff) could stay longer too". Later in the evening was when we learned about the other friends. I again tried to explain that they all left for different reasons...nurse Holly because her body was sick and that she has a new body now...free of sickness, to which he responded, "my body is still sick". I said, "yes, but you're not going to get your new body yet". He said, "no, we will get ours together". (more tears) I explained that with Kelly, and our other friends, that they are only going to different states and that we can visit them. He seemed okay with that.

We also decided to make a memory garden for our friends that have passed away...it is in the back yard so that Eliah can visit it whenever he wants to. We went out and bought a garden stone that says, "Give and it shall be given unto you" and has the scripture reference on it. Eliah picked that out for nurse Holly because she gave so much to him and others and now she has received her gift--healing in Jesus' arms. We have 3 other friends (kids) that have gone on to heaven too, and we will be planting flowers for them there. I will try to take a picture of it and post on the picture page soon.

Other prayer needs...we still need to find a nurse. The other thing is that Eliah still complains of belly pain and we have still be noticing some episodes of reflux while he is sleeping.

I need to go for now. Thanks for reading. Please pray for our friends Kyle, Jeffrey, Stephen, Izzy.

Hugs,
Chelle

Thursday, April 27, 2006 3:56 PM CDT

Lots of stuff still going on. We are missing nurse Holly so much. We have been talking about her a lot lately...answering many questions. Eliah said that he wished she could have stayed longer. We had our first appt. in nephrology since her passing, which was tough. I told Eliah that Nurse Marney would be his new nurse...he asked why and I explained that she was taking over Holly's patients, to which he responded, "I hope she doesn't die". It broke my heart to hear him say that...he just doesn't understand and is trying to make sense of it all. Nurse Marney gave him a picture of Holly to keep which I think helps a little.

His nephrology appt went pretty well. They had trouble reading the results of his bone density test because of the contrast in the balloon of his g/j tube. We found out that the contrast is supposed to be there, but they should have removed the fluid for the test. Oh well...hind sight is 20/20. For this test, they have to look at L1, L2, L3, and L4. They could only see L1 and L4. They said from what they could tell that he had some improvement, but that it wasn't enough to warrant decreasing his IV pamidronate at this time. They said that we have at least 2-3 more years on the IV infusions. He will be tested again in a year to see if there is improvement. After they get his overall bone density to where they want it to be, they will try maintaining him on a new oral med. They are doing some trials on it right now to see how well it works.

We got the results back for his EKG...it showed left ventricular hypertrophy (explained in my last update). We will begin seeing a cardiologist now...the one part of the hospital that we had been able to avoid up until this point. RATS!!

He has been using the drainage bags...I don't know if they have helped or not...he has still complained about stuff coming up and belly pain.

We had our state hearing this week...Medicaid was proposing to take away our DLS aide in order to provide an RN/LPN to care for Eliah. While we agreed that he needs an RN's skills (when we need a break or aren't here), we like our aide and don't want to lose her. She is consistant, on time, works well with our family...she has been with us for over a year. We were appealing the case and basically were told that if we continued with our appeal, that we would lose our case, lose the aide within 15 days, and that if we contested hard enough we stood the chance of losing waiver services altogether. We fought for 4 years to get the waiver...we can't afford to lose it now. I asked what was the longest period was that we could have to transition from our current aide to an RN and was told that if we withdrew our appeal, that we could have until the end of May. We took it. We are all really sad about it though. When you take a person (aide/nurse)into your home it is a welcome intrusion...the help is nice, but it is another person/personality put "into the soup"...if you know what I mean. Once they are there for a while, and especially working with your child, they become like part of the family. I know that God works all things together for the good of those that are called according to His purposes. I am certain that He will do that with this too...it is just going to be a really hard transition for everyone involved. Eliah was walking with Amanda today and said, "I don't want to lose you!" *tears*

We have an appt with phys. med tomorrow to find out more about Eliah's legs (tight hamstrings). I will update again sometime soon.

Please pray for our dear friends that are struggling so hard right now...Izzy and Jeffrey and for Kyle.

Hugs,
Chelle

Tuesday, April 18, 2006 9:42 PM CDT

Monday's update: April 17, 2006 10:13 AM CDT

Today is a very sad day for us...we got a call from the hospital informing us of the death of one of our favorite nurses. Her name was Holly and she had been fighting cancer for a very long time. It had been in remission a couple of times, but when it came back this time it was too much. She was an awesome nurse for many different reasons. She had a wonderful personality, but even more than that she understood what these kids go through because of all that she had been through herself. She went out of her way to make sure that Eliah was comfortable and happy when he was having a procedure done. Every time that we had anything going on at the hospital either we would go to her office to say hi, or she would come find us to "hang out" with Eliah for a little bit. She always had a smile to share, no matter how bad she was feeling...she would come in to work the day after receiving chemo and you couldn't even tell because she didn't let it get her down.

It is largely due to Holly's efforts that we were even able to get all of the doctors working together to get a diagnosis for Eliah and finally know what is at the root of all of his issues. I could never say enough about how much we loved her and how deeply she will be missed.

We were supposed to have an appt in Nephrology, the office where Holly worked, tomorrow, but will not be going as her funeral is during that time. Please remember to pray for her family, friends, and co-workers, and patients that are missing her so much.

When I told Eliah, he said that he was sad. He is really going to miss seeing her. I reminded him that she was a Christian and had Jesus as her Savior and immediately he responded, "then we will see her again when we die". I said yes and was so glad that he knows it doesn't all end here.

I'm glad that her fight is over and that she won't hurt anymore, but there is such an empty place now here on this earth.

Tuesday's update:

Eliah had a chalasia study done last week to see how far he is refluxing and at what frequency. We will be going in sometime soon for another endoscopy where they will take biopsies to see if damage has occurred in his esophagus from the reflux. If it has, then they will probably be looking at another surgery. If not, they are considering giving him some medication to lessen his sensitivity to the reflux...basically a comfort measure. This makes me a wee bit nervous though because then if something does happen and he isn't able to notice it...? Do you know what I mean? He complains pretty much all day of "stuff coming up" and of belly/intestinal pain. I don't know what is best...I don't want him to be so uncomfortable, but none of the options sound very good either. We will be hooking him back up to a drainage bag to hopefully relieve him of any gas in his tummy, and to help prevent reflux. We'll see.

He also had his Cisapride visit today. The EKG showed some abnormalities for the first time...all of his other ones have been fine, so this is not good news. We knew going into this that it had the potential for causing heart problems...we were hoping to avoid them though. She is concerned about ventricular hypertrophy (abnormal thickening of the ventricular septum and left ventricular wall). She is going to have a cardiologist take a look at the results and see if it would warrant us being followed by him as well.

One other thing that we had done today was his bone density scan to see if his bones have improved since last year...we should find out the results in the next couple of days. One thing that happened during that test was that they saw something "glowing"...it looked like he swallowed a nugget of silver or something (he hasn't, but that's what it looked like). I remembered about the Chalasia study and the contrast that they used...the radiologist said that the g/j tube balloon absorbed the contrast and that was why it showed up on the bone density scan. I will be calling the doctor tomorrow to see if the contrast being in his body for such a long period of time is damaging to him. The radioactive quality of it makes me pretty nervous.

Our friend, Jeffrey, had brain surgery again to remove some of his tumor...things went well with the surgery, but he needs LOTS of prayers for healing...we keep praying and waiting expectantly for his miracle. You pray too please.

Hugs,
Chelle

Monday, April 17, 2006 10:13 AM CDT

Today is a very sad day for us...we got a call from the hospital informing us of the death of one of our favorite nurses. Her name was Holly and she had been fighting cancer for a very long time. It had been in remission a couple of times, but when it came back this time it was too much. She was an awesome nurse for many different reasons. She had a wonderful personality, but even more than that she understood what these kids go through because of all that she had been through herself. She went out of her way to make sure that Eliah was comfortable and happy when he was having a procedure done. Every time that we had anything going on at the hospital either we would go to her office to say hi, or she would come find us to "hang out" with Eliah for a little bit. She always had a smile to share, no matter how bad she was feeling...she would come in to work the day after receiving chemo and you couldn't even tell because she didn't let it get her down.

It is largely due to Holly's efforts that we were even able to get all of the doctors working together to get a diagnosis for Eliah and finally know what is at the root of all of his issues. I could never say enough about how much we loved her and how deeply she will be missed.

We were supposed to have an appt in Nephrology, the office where Holly worked, tomorrow, but will not be going as her funeral is during that time. Please remember to pray for her family, friends, and co-workers, and patients that are missing her so much.

When I told Eliah, he said that he was sad. He is really going to miss seeing her. I reminded him that she was a Christian and had Jesus as her Savior and immediately he responded, "then we will see her again when we die". I said yes and was so glad that he knows it doesn't all end here.

I'm glad that her fight is over and that she won't hurt anymore, but there is such an empty place now here on this earth.

Sadly,
Chelle

Monday, April 3, 2006 10:25 PM CDT

We have had a lot going on lately. Eliah's infusion was the 24-26th of March. Things were better with his temperature, but his blood pressure was still an issue. The lowest it went was 68/35 and the highest was 125/69...his *norm* is about 100/60 ish. The nurses get a bit antzy about it, but don't really do much, so I don't know if I should worry about it or not.

Seems that our biggest issue as of late is his increasing reflux symptoms. Because of that nasty little fistula, he is refluxing more and more. Normally he doesn't tell us when something like that is bothering him because he doesn't like it when we "fix" things, but about 2-3 weeks ago he began complaining that "stuff is coming up". The more time that goes by, the more complaints we hear. He chokes some when sleeping and feels the need to spit frequently while awake to "get the stuff out" of his mouth. We did a trial run of stopping the Cisapride this past weekend to see if it would help matters any, but it didn't, so we resumed usual dosing today. We will go in for a Chalasia study on the 10th of this month to see what all they are able to pick on film to determine the best course of action. I don't know what to think...I just know that I am tired of him feeling crappy...along with the stuff coming up all the time, he also complains of belly pain frequently throughout the day.

He is still trying to take some things by mouth which is good. We work with the OT on trying to increase tolerace for new things (tastes/textures). He's not real excited about new things...he likes what he knows best.

In PT he is learning to hop, *trying to learn how to skip*, learning how to ambulate up and down the stairs alternating feet, learning how to throw a ball and catch (playground ball), learning jumping jacks and trying to build up his abs a little...because of all the surgeries on his belly he basically has no muscle strength there.

Please remember to pray for our friends (those of you that know of them)...Kyle is trying to adjust to some new changes (big ones), and Jeffrey is trying to get well enough to go to St. Judes for treatment for his cancer.

Hugs,
Chelle

Tuesday, March 14, 2006 8:25 PM CST

Eliah's urine tests came back good, so we are still not quite sure why he has to go to the bathroom so much...hopefully that will change as he is potty trained longer. He has been doing AWESOME with this. He is only able to train during the day right now because of the meds he takes at night to sleep...he couldn't possibly wake enough to go potty. But we are okay with this and he seems to be too. He is doing better in terms of his constipation problems too, after doubling his Miralax dose. He is refluxing a lot, both during the day and at night, but hasn't had any other problems with aspirating that we are aware of. He has also had belly pain, but we are unsure of why.

Otherwise, he is doing well. Learning his ABC's, counting, and even doing some oral Math. There is a good possibility that he might be finishing speech therapy this month. I am kind of split on how I feel about this...I still think he needs more help with some things, but at the same time, I'm not real thrilled with the therapist that we have had this time around, so I wouldn't be real sad to leave. Plus, shedding one of our appts per week would be nice.

Melody performed in the play Cinderella at the high school this past weekend. She seemed to enjoy it and Julie and Eliah LOVED seeing it. I think Caleb had fun too. I will *hopefully* post some pictures soon of that. Eliah got his picture taken with the King (who is a boy named Josh that also has a feeding tube) and Julie got her picture taken with Cinderella.

Hugs for now,
Chelle

Tuesday, March 7, 2006 9:19 PM CST

We had another GI visit today and all went well. Eliah's weight is back up to 17.7 kilos (38.94 lbs). They are testing his sugar to make sure that everything is okay there...because of his frequent need to urinate (he has to go 3 times an hour), we thought it would be worth checking. We have had to increase his Miralax to help with his constipation issues, but otherwise no medication changes are being made right now.

We go in for his infusion on the 24th of March and will be there through the 26th.

I think that's it for now.

Chelle

Wednesday, February 22, 2006 6:38 AM CST

Last Friday we went to get labs done to see if Eliah has a Carnitine deficiency. Some kids have this issue alone and others have it because of another metabolic problem...either way they treat it the same, with supplements, to help with energy. When I initially called to make the appt, they couldn't get us in at a time that fit with our schedule, so I kept calling around until I found someone in neurology that said that we could just go to the lab to get the blood drawn. I questioned them about this because I didn't think that they could take blood from his central line, but the person that I spoke with assured me that there would be someone down there that could do it. So, being a sheep and believing that she actually knew what she was talking about, we went. When they called us back, I told her that his port was already accessed, and she told me that they "didn't do ports" and that we were the second port kid that they had received that day. I told her that I knew they didn't, but that someone in neuro told me that someone would be there that could. They said no way. I told them that I wanted the paperwork so that I could find someone to draw the labs as I was not going to leave the hospital until the tests were done. We then proceeded to go up to neurology where we had to wait for an RN to come back so that the blood could be drawn. The RN that was there hadn't done any port access for a year and was a bit rusty, but (under my watchful eye) did a good job. I asked her what all was written on the lab slip, because there were a lot of things marked...it was the basic stuff that they usually do but she said that one tube was for the carnitine levels. She gave me the blood to take back to the lab and when I dropped it off to them they said that the report would be sent back to GI. GI wasn't even the ones who ordered the carnitine levels to be tested!! Neurology wanted them. The next thing that I hear about this is on Monday morning, one of the GI nurses called me and asked if Eliah had been having problems that warranted him getting the Cisapride labs done again. They ran the wrong set of tests and didn't even do the Carnitine levels!!! I called and ranted and raved about it with neurology today and told them that we would not be back in to be tested until March when we come in for his infusion. I'll be darned if I am going to make Eliah go through another stick just because someone was too dense to get the right test ordered.

Other than that whole crazy ordeal, things are going okay. We have another appt with ortho this Friday, and OT, PT, SLP this week.

That's it for now.

Chelle

Tuesday, January 31, 2006 9:21 PM CST

Okay...I am copying and pasting what I wrote a couple of hours ago because I did forget to explain something...sorry. I will paste it in where it should have originally been, so you'll have to read this whole crazy thing again (if you already read most of this) to see what it was that you missed on the first go-around. *grins*

>>I am going to attempt to fill you in without forgetting anything *drum roll please*...a lot has been going on (again) lately.

We went in for the gastric emptying study last week, which showed that he has gone from having his stomach empty too slowly, to now, where it is emptying too quickly (dumping). The symptoms are similar enough (effecting his stools, belly pain, blah, blah, blah). One thing that was supposed to be a *benefit* (of sorts) is that with things leaving his stomach in a hurry, there *should* be nothing left sitting there to reflux on...right?? The plan was to allow him to eat and drink what he wants to by mouth, and that it should be safe. We seem to forget that Eliah hasn't read the rule book and doesn't do things like he *should*. He had an episode just this past Friday where he was refluxing really bad just before going to bed...we could hear it coming up inside of him and he commented on it which he rarely does anymore because he doesn't like when we "fix" things (going to the doc). At 2am that same night/morning he woke up screaming, "I can't breathe, I can't breathe!" and trying to breathe which was very loud and laboured. After we got him to settle down, relax and take a drink of cold water, things seemed to resolve enough for him to get back to sleep. Then at 7am the whole thing happened again. We came close to calling the medics the first time around and were planning on going to the hospital after the second one, but once again, after he relaxed and could take a drink, he seemed to be okay enough to stay home. I called to talk with someone in the GI dept and was unable to get ahold of anyone (later found out what I needed to do to reach someone...grr) so we didn't get to see a doc concerning this issue until today. We made the hour trip to the doc (at least the scenery was pretty) and found that she was as concerned about what had happened as we were. She agreed with the GI that we should be allowing him to eat/drink by mouth, but that with the fistula, the risk for aspiration seems to still be an issue for him and it concerns her greatly. She wrote for some abx incase he should aspirate again, so that we would have them on hand to start right away and encouraged us to begin breathing treatments as well (which we had already done). She listened to his lungs and said that they were clear (praise God) and then went on to explain what most likely occurred to cause the problems. She said when he was refluxing that he had a spasm in the area of the larynx and epiglottis (she had some fancy doctor term for it, but I can't remember what the word was...sorry) that caused the coughing and difficulty breathing. She said that this would happen as the body was trying to protect his airway from the moisture (tummy stuff) that was there. It made sense to me, the way that she explained it, I hope it's clear enough...the way I explained it.

I found out today that she (ped) will be coming to Columbus more frequently starting in the next couple of months as she now has a PA working with her to lighten her load. It will be a relief to know that she will be closer more of the time.

I think that is it for now. If I forgot anything I will post again, but for now that's it.<<

Hugs,
Chelle

Tuesday, January 31, 2006 4:22 PM CST

I am going to attempt to fill you in without forgetting anything *drum roll please*...a lot has been going on (again) lately.

We went in for the gastric emptying study last week, which showed that he has gone from having his stomach empty too slowly, to now, where it is emptying too quickly (dumping). The symptoms are similar enough (effecting his stools, belly pain, blah, blah, blah). One thing that was supposed to be a *benefit* (of sorts) is that with things leaving his stomach in a hurry, there *should* be nothing left sitting there to reflux on...right?? The plan was to allow him to eat and drink what he wants to by mouth, and that it should be safe. We seem to forget that Eliah hasn't read the rule book and doesn't do things like he *should*. He had an episode just this past Friday where he was refluxing really bad just before going to bed...we could hear it coming up inside of him and he commented on it which he rarely does anymore because he doesn't like when we "fix" things (going to the doc). At 2am that same night/morning he woke up screaming, "I can't breathe, I can't breathe!" and trying to breathe which was very loud and laboured. After we got him to settle down, relax and take a drink of cold water, things seemed to resolve enough for him to get back to sleep. Then at 7am the whole thing happened again. We came close to calling the medics the first time around and were planning on going to the hospital after the second one, but once again, after he relaxed and could take a drink, he seemed to be okay enough to stay home. I called to talk with someone in the GI dept and was unable to get ahold of anyone (later found out what I needed to do to reach someone...grr) so we didn't get to see a doc concerning this issue until today. We made the hour trip to the doc (at least the scenery was pretty) and found that she was as concerned about what had happened as we were. She agreed with the GI that we should be allowing him to eat/drink by mouth, but that with the fistula, the risk for aspiration seems to still be an issue for him and it concerns her greatly. She wrote for some abx incase he should aspirate again, so that we would have them on hand to start right away and encouraged us to begin breathing treatments as well (which we had already done).

I found out today that she (ped) will be coming to Columbus more frequently starting in the next couple of months as she now has a PA working with her to lighten her load. It will be a relief to know that she will be closer more of the time.

I think that is it for now. If I forgot anything I will post again, but for now that's it.

Hugs,
Chelle

Thursday, January 19, 2006 4:36 PM CST

Okay...I got a little more clarification and hopefully my communication of it won't seem too redundant...my understanding of what the doctors had said was that it (the fistula) wasn't that big of an issue. After speaking with the nurse (she talked to the doc to make sure that I understood things) she said that the reason that they are not going to do anything right now is that it (fixing the fistula) was too complicated to deal with at this point. That as long as he was doing well with the j-feeds that we would leave things alone until it becomes more of a problem for him. We are still going to see if he can do any solids, but everything else will be going through the j-tube.

He is doing pretty well right now. He had a good day at both his PT and SLP.

Hugs,
Chelle

Tuesday, January 17, 2006 9:45 PM CST

Well, Eliah had his surgery today and things went well. He had a little trouble keeping his sats up in recovery so they did some 02 and he was fine.

A dear friend came and sat with me during his procedure which was a HUGE blessing.

When the docs came out to tell me what they saw and what they are planning on doing about it, they said that it was pretty much what they expected to see...a fistula through which he is able to reflux. The nurse described it as 2 openings. At this time they aren't going to do anything surgically to fix it unless it presents more of a problem than it already does. He has been doing well on his j-tube feeds, so they feel okay with letting it wait. They do want to do a gastric emptying study (next week) to see if he is okay to take some solids by mouth, while still taking his formula via the j.

I think that's it for now. I will try and write more later. Thank you so much for all of your thoughts and prayers.

Hugs,

Chelle

Wednesday, January 11, 2006 8:59 PM CST

Things are plodding along here at the Smith house. Eliah's antibiotics are done and besides a yeast infection, he did well with them. They did a chest film on him on the 8th day of his meds, and it was clear. So we can go ahead with the surgery on the 17th. I talked with the surgeon's nurse and she said that they would only be going in to see what is going on...see what to do about the fistula and see if the nissen has come undone or what caused the trouble with his feeds (and him vomiting). They aren't actually going to do any repair work that day that we know of. He has been having pain in his belly every day. We have been leaving his g-tube open to drain anything from his tummy and to relieve any gas, but it doesn't seem to help much. He complains a lot when we give his night meds. Hopefully they will see what is causing this as well.

Everyone else is healing up here...Melody's throat is still sore from the tonsilectomy, but it is getting better. Scott, Julie, and I are over our respiratory thing, and Caleb has avoided it altogether.

I will update probably after his procedure.

Hugs,
Chelle

Saturday, December 31, 2005 7:53 PM CST

Wow! This year has gone so fast! I cannot believe we are to the end of it already.

This year has been filled with so many different things...good and bad, questions and finally some answers. There were times I thought they would never come. Of course the answers raise a whole new set of questions, but at least ones with some direction.

We are going into the new year with *new* concerns. I used the * because they are ones that have happened before, but each time they happen, it is a *new* thing. Eliah threw up at 2:30 in the morning on the 23rd of Dec. Anyone who knows him, knows that this is a very bad thing. I wish that I could blame this on one of the many viruses that have been flowing through our house, but it wouldn't be accurate. He had shown no symptoms prior to that and stopped vomiting as we stopped his pump. (The others that have had the vomiting thing have continued vomiting long after their stomach was empty.) Too much info?? I don't know if his vomiting means that he is refluxing really bad through the fistula or if the nissen has come undone once again. That was followed by coughing the following day and fever which his ped feels is probably aspiration pneumonia. She put him on antibiotics (abx) and gave us a script for a chest film depending on how he does. He has also be placed on a g-j tube for feeding and meds until the procedure in January. This procedure was supposed to be (at least I think) fairly simple...with all of this going on now, I don't know what to expect.

He did have his hearing test and it came back showing that his hearing is fine. I asked the SLP why he still appears to have issues with hearing...we both agreed that some of it is simply his age, but she thought it might be worth questioning the neurologist for further answers. Because of his mito dx, she wants to follow up with him on a yearly basis.

The rest of the household has been sick with one thing or another since Christmas. We are hopeful that the new year will be filled with good health for all of us.

Melody got her tonsils out on the 29th of Dec, so she is recovering.

It's been busy to say the least.

I hope this note finds you all well. Thank you for the friendship and support that you all give to us on a continual basis...it is through this and from God's hand that we find our strength. God bless your new year!

Hugs,
Chelle

Friday, December 16, 2005 1:18 PM CST

Last Friday we received a call from neurology saying that they had gotten the results back for the muscle biopsy. It confirmed that he has mitochondrial complex 1 respiratory chain partial deficiency. We have been reading a lot to try and understand this better. The bad news is, that it is progressive. The good news is that we finally have an answer that helps us to understand why so many things keep going wrong inside of him. Also, knowing some about what happens with a mito disorder, will help us to be more prepared for what can happen at various stages. Someone asked me last week at church, "So how do you feel about this? How does this effect you?" I just said that we get up each day, look at what we have, and deal with it and go on. Really it is what everyone should do, but it is pretty easy to get caught up in making plans, rather than living what is right in front of you. The good days we enjoy, the bad days we cope with, and just squeeze as much out of each moment as we can.

A little bit about mito disease for those that don't understand it...there are mitochondria present in every cell. The mitochondria are responsible for energy production and if they are defective, your body cannot function as it should. For Eliah, the different systems that have (so far) been effected are his brain (dev. delays, occasional seizures, some cerebral palsy like symptoms), nerves (severe reflux, intestinal dysmotility, constipation, excessive sweating resulting in temperature regulation problems), muscles (hypotonia and occasional muscle pain), low blood sugar (as an infant), ears (experiencing some hearing loss), and systemic (difficulty in gaining weight, short stature). We don't know if other areas will be effected in the future and currently there is no cure for this. We will continue with all of his therapies and treat symptoms as they come up. There is a possibility that he could take some supplements that could help, but some blood tests need to be done to determine if those are appropriate.

I don't know yet if this has anything to do with his brittle bones or if that is a seperate issue altogether.

I think that's it for now. I usually remember something after I sign off. If there's anything important, I will post again.

Hugs,
Chelle

Friday, December 9, 2005 6:38 AM CST

Yesterday we had Eliah's Cisapride visit, EKG, and surgical follow up (from the surgery in March...to see how things are progressing). The EKG was good...thank goodness this has always been the case with him. When we went to the surgery visit, Dr. T asked how things were going...I asked him if we could talk out in the hallway and then explained once we were out there that Eliah is telling us less and less about how he feels (medically) because he knows that if he tells us that we will try to "fix" it, by telling the docs. Obviously not wanting that to happen he has started telling us (specifically when he is choking, which happens frequently throughout the day) that "I'm fine, I'm fine" or "My belly just got too excited." When I shared this with Dr. T, he got the "ah-ha" look on his face...he knew what that meant. A while back they had said (regarding the fistula or second channel connecting his esophagus and stomach) that they were just planning on watching and waiting, to see what was going to come of that, unless it started giving him problems...then they would have to look into it...from what Eliah is telling us and his mannerisms (frequent swallowing and chewing, along with choking 5-6 times a day) we all think that he is probably refluxing more through that fistula. They have scheduled him for another surgery on the 17th of January to look around and see what they can find and then determine what they are going to do about it. This *shouldn't* involve any cutting as they are going to use a scope (I think that they are going to scope him from both ends of his stomach/esophagus...the one obviously going in his nose/mouth and the other through his g-tube site. At least that was my understanding. Once they get in there and see what is wrong, I don't know if they will try and fix it or go back in later. Because of it being general anesthesia, I would rather they take care of things all at once. However they mentioned before that they had never seen this before and weren't sure quite how to go about fixing it. I guess we will just have to wait and see. Another thing that Dr. T asked me was if Eliah had muscular dystrophy. I said no and asked why and he said that there was something in his chart and that the surgery would be done like they do the MD kids (using different anesthesia than the usual stuff) and that he would have to be the first case. This whole thing was news to us as we have never been told anything about this with regard to previous surgeries. Apparently they have taken these precautions before, but I would like to know more about why. Either way, I am glad that they are erring on the side of caution, but this whole new thing is definately a concern.

Eliah's big sister will also be having surgery. Melody has to have her tonsils removed. A very painful surgery at best, and now that she is 15 years old, it will be much harder to recover from than if she were younger.

Please keep both of these guys in your prayers along with our many friends with healthcare needs. Our friend Izzy needs another transplant, Kyle has an upcoming surgery, and Jeffrey has some really nasty chemo that he is dealing with.

Hugs,
Chelle

Sunday, December 4, 2005 11:25 PM CST

This is just going to be a short note for now. I will update more in a day or two (*hopefully*).

The reason I didn't update sooner is because I am still trying to process all that happened while we were in the hospital. To put it mildly, our stay was horrendous. A lot of foolish mistakes were made...inexcusable (sp) really. Upon returning home I spoke with his infusion nurse (the one that handles most of his stuff) and she assured me that our next stay would be much better.

She also said that either the neurologist or the geneticist was supposed to get back with me on Friday (of last week), they failed to do so. I will be calling tomorrow to see what they have to say.

He did better with his temperatures...usually he gets a really high fever, but this was not the case on this stay. He did however have trouble with his blood pressure going too low...that was concerning.

I'm tired...I will write more soon.

Eliah and his dear friend Kyle are getting together to play tomorrow...we are all going (me, Eliah, Amanda, Julie, and Caleb). He is so excited!

Friday, November 25, 2005 6:44 AM CST

Happy Thanksgiving! I hope you had a wonderful day yesterday. We did...God has given us so much and we are truly grateful!

Well...today's the day...we go in for Eliah's infusion today and will be there through Sunday. Keeping our fingers crossed and our hands folded that this is an uneventful stay this time around. Prayers that are needed: no seizures, no fevers, normal sats and bp, "stay away from us germs" prayers, and *hopefully* some answers to the long awaited tests. Okay...one more prayer...kind of a whiner prayer...we would really like to have our favorite nurses working this weekend...we get some that are a real drag and others that are awesome...the really cool ones make the stay a lot better.

I will update when we get back home...probably not the same day though because coming home day is always chaotic, but in the days following.

Please remember our friends Kyle, Izzy, Josiah, and Josiah's grandpa Dan in your prayers. Those of you I have shared with about these friends of ours will know how to pray.

Hugs and lots of love,
Chelle

Sunday, November 20, 2005 9:47 PM CST

Eliah has been doing pretty well lately. (*knocking on wood*) He has his infusion scheduled for this coming Friday through Sunday. We always seem to hit one holiday or another, but at least this time it isn't landing on Christmas. The only things that we have noticed with him recently has been that he has dark circles under his eyes most times and he has been having some belly pain almost daily. It hasn't been bad enough to get seen for though.

We still don't have results back from the tests...I am hoping to light a fire under somebody's rump before the infusion, or at least raise enough of a stink while we are "in house" to get some answers.

His therapies have been going well. He was sportin' a bit of an attitude this past week and didn't want to cooperate, but was able to still get a good deal accomplished.

I think that's it for now.

Chelle

Thursday, October 27, 2005 10:25 PM CDT

Quite a lot has been going on lately. I think one of the most frustrating has been dealing with some medication difficulties. We have had to compound his medications at home for a long time now (making the tablets/capsules into a suspension to administer through the tube). Every time that we have made them, they turn out to be a chalky, cloudy white. The last 2 times that we made them they turned out to be a dark plum color and another shade of deep purple. Obviously we didn't give those meds because of suspecting a problem with them. We called the hospital, local pharmacy, mail order pharmacy, drug manufacturer, drs...etc and all of them agree that it sounds like there is something wrong with the drug that we are using. (duh) He went without this med for 5 days...big problem as this is the med that keeps his stomach from bleeding. We now have a months worth of samples to use until we get this issue resolved. We also received word today that the manufacturer is going to pay to ship the meds back to them for testing, and that they will let us know of their findings. They haven't been very quick about their response, but I must say that I am pleased that they are so willing to work with us to resolve the problem.

Some other stuff...we have noticed some hearing problems over the past month or so. Eliah says, "what" a lot and really doesn't seem to hear us often enough that it was somewhat concerning. He had a hearing test done at his speech therapists and she said that he isn't hearing the lower frequency sounds. We talked with the neurologist and he says that he wants us to have an audiology screening to test for sensorineural deafness related to mitochondrial respiratory chain complex I deficiency.

The muscle biopsy showed possible complex 1 and 3 mito stuff...though we still don't have the final results back yet.

His growth hormone levels are low enough that they are doing a growth hormone stim test next Tuesday (4-6 hr procedure). Also, with his bone scan, his bone age is only 3 years 6 months...his actual age is 5 years 5 months.

The last thing (I think) was the IgA levels...normal is between 54 and 150...Eliah's numbers were up at 246 when last tested. I have asked the hospital if they would repeat that the day of the stim test, so that we have something to compare it to. I've not heard back yet, but I can't see where they would say no.

Thank you for your prayers and support. Please remember our friend Jeffery as he and his family received difficult news this week.

Love,
Chelle

Tuesday, October 11, 2005 5:37 AM CDT

I haven't updated for a while because the questions are still out there and the answers are just beginning to trickle in ever so slowly.

I talked with the hospital yesterday and found out that the bone age scan that they did approx. 3 weeks ago showed delayed skeletal maturity...that his bone age is 3 yr 6 mo when his actual age is 5 yr 5 mo.

I also said that, "I knew that his IgA numbers came back slightly elevated" and his nurse said, "Slightly?". I then asked what his numbers were compared to the normal range...normal (for his age) is 54-150...his numbers were 246! I asked some questions about this, but did not hear back just yet.

I also asked about his muscle biopsy results...to see if they had gotten them back yet, but as far as we know they haven't. The last results showed abnormalities, but that seemed to us to be pretty unclear. We have an appt scheduled for this Thursday with neurology to talk with Dr. T about the muscle biopsy. Hopefully the results will come in before then. I will have to update again after our appt or when results make themselves known...which ever comes first.

Eliah had a dentist appt last week (as did his siblings) and he did fairly well. He got a little gaggy when the dentist went to wipe his teeth off with a gauze pad. I stood up to offer support to Eliah and to "talk him through his gag"...this is what we do all the time at home and it really seems to help. The dentist, however, told me rather abruptly to "go sit down". Needless to say that really kind of peaved me because 1) it is my child, and 2) I know better than anyone how best to help him and I didn't want him to feel scared or alone. My presence during procedures has always been calming to Eliah, rather than intrusive. I didn't instantly bite the dentist's head off, but am seriously considering having a meeting with him to tell him what I thought of his comment. If he cannot accomodate both of us, then we may begin looking elsewhere. I still have to pray about it though, and get my attitude in the right place before trying to approach him.

We have a number of friends and family that are in need of serious prayer right now (some that have been for a long time). I am not going to list them all right now, but God knows who they are...if you could just lift up a general prayer I would appreciate it.

I think that's it for now. I will try to be better about updating more frequently.

Hugs,
Chelle

Tuesday, September 27, 2005 8:57 PM CDT

BOY that month went fast. *sheepish grins* Sorry that I haven't updated sooner.

We went to the hospital today for Eliah's Cisapride study follow up, EKG, endocrinology appt, and consult with the nephrologist and a new geneticist (specializing in kids with bone disease). One piece of new information that we got was that some of the results were back from the second testing of the muscle tissue that they obtained during his surgery in March. If you'll remember, this is the test that the hospital wouldn't (initially) send out...until our wonderful GI went to bat for us and lit a fire under their rumps. The preliminary screening results showed some abnormalities, so they are currently in the process of geting additional testing done on the samples that they have left. They have also said "something that would prove to be more definitive" would be to get a fresh sample, because of accuracy

I was going to type about the rest of the day, but I keep falling asleep. I will write more soon...probably tomorrow.

Hugs,
Chelle

Friday, August 26, 2005 9:28 PM CDT

These medically challenged kids sure know how to keep life interesting! Today we went to the surgeon for a *typical* follow up appt which very quickly turned atypical. When Dr. T came in he started going through Eliah's chart and asking questions, he asked if Eliah had been having any reflux symptoms. I mentioned that he had been burping a lot, but that I figured at least half of that was due to his being a 5 year old boy that just figured out how to make himself burp. He (dr) didn't like that as the nissen is supposed to prevent anything from coming up. He sent us down for an upper GI and this is where things went south. The nissen appeared to be in place and seemed to be working, but they saw something that they had never seen before that concerned them...instead of just seeing barium in his stomach, there was this little trail of it going up into his esophagus...not good. They had him try taking some of the barium by mouth to watch his swallow...to see if it followed the "correct" path to his stomach. Needless to say it didn't...some of it went down the right way and the rest of it went down that other little trail. When Dr. T consulted with Dr. B (in radiology) they both concluded that it was something they hadn't ever seen before. In fact, when Dr. T and I met a little later, he said that in all the years that he had been doing surgery, that he had never seen this, nor was he certain of how to treat it. Way to make history, huh? He will be meeting with his colleagues early next week to try and figure this out. He is guessing that they might be able to make some sort of "apoxy clot" to block the "extra" passage way to prevent aspiration...this would most likely be done with a scope. The other assumed option would be another surgery. This is a scary option because without knowing what caused the "extra passageway", you can't be certain that it wouldn't happen again. Whatever is done needs to be done soon as aspiration is a big risk for him.

About the muscle biopsy that I have been chirping about for so long...our GI doc was finally able to convince the neurologist to send it out for enzymes. Hopefully it will give us some answers.

Last week we went to a physical medicine appt where they dx'd Eliah with CP. I'm still not sure how I feel about this. If this dx is correct, then it would help to explain a few of his issues. Many others still remain a puzzle to us though.

About Eliah's arm...the CT scan showed that he has a synostosis (basically that the bones are fused). This is what they have been saying for years, but there was concern that it could have been an osteochondroma (benign tumor) which would have required surgery. For now they are just watching things and waiting.

I think that's it for now. Thanks for reading and for keeping Eliah in your prayers. Your prayers mean the world to us!

Hugs,
Chelle

Tuesday, August 16, 2005 4:40 PM CDT

I started to update about 2 weeks ago, but it got deleted and I didn't have the patience to do it again until now. I have also been waiting on information from the doctors to be able to give you as much info as possible.

We now have Eliah's night feeds up to 66 ml/hr! He seems to be tolerating it very well so far. We replaced his button (feeding tube button) a few weeks ago, and since have noticed that his stoma is leaking again, so we are going to try hooking him up to his Farrell valve (to help with pressure in his tummy) to see if pressure is the problem or if it is just the new button. The reason for the switch in the first place was because the Mic-key button was constantly having valve failures resulting in losses in medication and feeds. Technology!

He is still tolerating his boluses about the same. Half the time he does well and the other half he has pain. We have been unable to increase the amount as of yet.

There has been a major meeting of the minds in regard to Eliah's muscle biopsy, but still no answers. The geneticist said (today) that she is unable to really push the issue about getting the second test sent out because she was not the ordering physician for the initial test. She said that I will need to talk to the neurologist and see where we can get with him. One of Eliah's nurses (in the metabolic bone disease clinic) said that we might want to consider going to Shriner's hospital to have another biopsy done with a fresh sample, rather than frozen (the way they do it here). They are able to find more out from a fresh sample. Wish we would have known that before we had the first one done. I'm not quite sure what we are going to do with that. That same nurse spoke with the neurologist about the tests and said that he told her that he had sent all of the information he had to somewhere else (can't remember where) and that they would make the decision. She seemed to feel that he wasn't done looking for answers. We'll see what comes back.

Eliah has had some recent problems with bone pain in his hips and knees. When I brought this up to the PT she checked him out and said that his hamstrings were "significantly tight". She was a bit stumped by this as he has always been "low tone" and for him to jump to the other end of the stick and have high tone is really confusing. Two other PT's checked him out the same day and collectively, they discovered that his range of motion in his right leg was -40 degrees and his left leg was -25 degrees. This was also a little confusing as most of his issues have been on the left side of his body. I think someone forgot to show him the "rule book". He keeps switching things around on us! The PT and nephrologist both want us to go back to the neurologist concerning his tone problems to see if it is neurologically related. We went to the orthopedic surgeon about it this past week and he didn't seem to be able to offer much wisdom. Maybe this added to the other stuff that has been going on will help to point us to some answers.

Also when his PT was checking him out, she checked his range of motion in his left arm (the one with the fused bones) and said that things are worse with that. The orthopedic surgeon sent us to get a CT scan done. I will have to post again with the results. Basically he seems to want to "put the issue with Eliah's arm to rest". I would too, but I would also like to get to some answers and help him if we are able. There is a possibility that there is some cartilage overgrowth. If this is the case, then they could operate and actually make things better for him. Otherwise, if it is just bone, then there is nothing that they can do and it will only get worse.

Another thing that we had to have done today at the hospital was get labs drawn to check for growth problems as he has fallen off the growth charts again. If these tests come back showing decreased growth hormone, then we will have to begin giving daily injections (6 days a week) to help him grow.

Therapies...he is now getting weekly SLP (speech therapy), along with OT, and PT. I will have to share more specifically about the results of the evaluations later.

That's it for now. I'm sure there is more, but I will have to type it later.

Hugs,
Chelle

Monday, July 11, 2005 5:37 AM CDT

We have been able to increase Eliah's drip feeds at night to 56ml/h. It has taken 3 weeks to get him up to that, but he is tolerating it pretty well. The boluses aren't going quite as well as we would like them too. About half of the time he does okay with them, but then the other half he complains of belly pain and asks for his drainage bag. I am hoping that as he gets used to them, that he will do better, but I am afraid that things will go like the usually do...where he continues having pain and where things get worse until we have to stop them. I don't mean to sound like Eeyore, but it has just happened so many times before. We'll see.

We had a meeting with one feeding therapist about 2 weeks ago, and we'll just say that she was less than impressed with his feeding schedule. She called and consulted with the GI and they told her that "Eliah has to have the amount of calories that he is currently getting and that mom is adjusting the feeding schedule according to Eliah's ability to tolerate it." I so appreciate having the backing of a GI doc that knows how well a parent knows their child, and trusts us with their care. The old GI wouldn't have been so good about handling this.

We have an OT evaluation today, a SLP eval later on this week, and sometime soon a sensory eval. After all of these, we should know better where we are going with his therapy needs.

As far as the muscle biopsy results...we met with neurology last week and he said that basically because the rest of the tests came back looking fairly good, that the hospital couldn't justify the cost of sending out another test!!! I was infuriated...seeing as they have a sample of my son's leg tissue, that if not used will go bad...something that took him a long time to recover from, and they don't think it is "worth it" to send it out?? I talked (and cried) with the GI doc on Friday about it. She was going to take his chart home over the weekend and will put a call in this morning with neurology and genetics to see what's going on.

It is so frustrating, not having any answers. So many of the tests have come back showing nothing, when the doctors all know there is something wrong...after all, he can't sleep, digest food, or poop without medication...his bones are fragile (improving, but still needing treatment), he still has the "freak" seizures once in a while, he can't tolerate much change in his feeds...and so on and so on.

On a happier note...Eliah went to his Sunday school class this week. His aide, Amanda, has approval for hours on Sunday, so she was able to be there to help him. At first he was not excited at all about being there, but with Amanda at his side and Daddy across the table, he settled in. As the class went on, he started to get more involved. This is exciting and scary at the same time...scary because of illness. The summer "bugs" are supposed to be less aggressive than the winter ones, so we are hoping to challenge his immune system some and see how he does.

I'll update as soon as the evals are over and let you know what they say.

Wednesday, June 29, 2005 5:10 AM CDT

I'm sorry that I haven't updated lately. There has been a lot of stuff going on lately, but not much that is real "news worthy".

Eliah has been doing pretty well. We went to see his GI about 2 weeks ago and asked if we could begin doing some boluses to buy him some time off of the pump. She said that it would be fine to try some small ones to start out with and to increase the amount as we felt he was able to tolerate it. He is excited about not having to be on his pump as much, but has struggled some with the boluses as they sometimes make him gag and retch. We also tried increasing his night rate (on the pump) to 71cc per hour and that (an increase of only 21cc per hour which is approx 4 teaspoons an hour) didn't go so well. He woke up with a lot of belly pain and he couldn't have a bm. So for now we have backed him down to 50 and will begin to try and make the climb slowly with his rate. Obviously, the more that we can get in him at night, the better for getting him to eat by mouth during the day.

Which leads me to my next thing...we have been meeting with feeding therapists...actually...we met with one and have appts to meet with others soon. Getting him onto night feeds (mainly) is going to be key in doing any kind of feeding therapy with him. I am really struggling with wanting him to continue OT and the feeding therapy things because he seems to do better when it is just us working with him at home. As much as I appreciate their suggestions for things to try with him and different approaches that might work, I would rather just do these at home. I am not going to make a decision about whether or not to continue just yet...I will wait until after the other appts to decide.

His PT sessions have been going well. He is becoming more confident with the stairs, and just last week, went up and down them, alternating feet (HUGE accomplishment) without any prompting!! Yay Eliah!!! He is also working on numerous balance and endurance things, as well as learning to throw/catch balls.

That's it for now...I know there's more that I need to tell you about, but I can't remember right now.

Please as you pray for Eliah, remember two of his special friends that are having many struggles. Their names are Kyle and Isabelle.

Hugs,
Chelle

Thursday, June 2, 2005 3:23 PM CDT

I talked to the genetics doc and she said that under the microscope, that there didn't appear to be any sign of mito, but that the test that is usually done by her dept in a kid that they suspect mito wasn't done, so she talked with the neurologist and they agreed that it needed to be ordered. Apparently it hasn't been sent out yet, but she said that she would call me when it was and when they got the results back. I said, "so if it comes back showing mito, then we will figure out what we should do to address it?". She said yes. I also asked her (always trying to think ahead) "where do we go from here" if it comes back saying that mito isn't the issue? She said that as much as she hates it, that we might have to settle for the discouraging answer that there is no real good explannation for why he has struggled so and had so many challenges. She says that she has a lot of kids that don't fit into any specific category, which is discouraging and makes it hard.

I have said it before and I will say it again...I would just like to have a "starting point" to be able to go from with him medically. It is hard wondering around in the dark all the time, never knowing why things are happening and never knowing what is up ahead. Dr. A agreed and understood. She said that not only is it discouraging for the families, but for the doctors as well.

That's it for now.

Hugs,
Chelle

Tuesday, May 24, 2005 5:48 AM CDT

ELIAH TURNED 5 YESTERDAY!!! As I look back and see where we have come from, I am amazed at this wonderful little boy. He is so strong! Since his birthday party over the weekend, he has become a gardener (with tools from his birthday party), a play dough factory kitchen chef, my house is now a construction zone with all of the new trucks he received, amongst many other wonderful gifts.

I haven't updated in a while because we are still waiting on results to the muscle biopsy. Initial results came back saying that, basically, they didn't find anything. In many ways this is a very good thing, as mito issues are not something that we want. But in other ways, we are back to where we started from...not knowing much of anything and not being any closer to answers than we have been the rest of his life. When I talked with the geneticist about the results the surgeon had gotten back, she said that until the results are reviewed and studied by a geneticist, that we don't have any answers. So again, we wait for further results to come back.

In some ways (and this will sound twisted at first, so PLEASE keep reading so that you will understand), I was disappointed at not getting an answer. Again, not that we wanted mito to be the answer, but had that been the one that came back, it would have helped to explain man of the issues already at hand. I don't want him to have "this disorder" or "that disorder"...I just want answers...we want answers. There have been so many questions throughout his life...he has had to go through so much...he's got so many different issues (feeding, brittle bones, immune challenges, occasional seizures, etc...) and I don't know what to expect at any given time or how to explain what has happened thus far. I keep searching because I don't want him to get to the point where he asks what has been the cause of all his hardships, and all I have to tell him is "I don't know" or "I didn't fight hard enough to find the answers for you." At the same time, it is hard to strike a balance between wanting to know and searching for the answers, and knowing when to let go.

He has been "holding steady" for a while now. Nothing big has happened THANK GOODNESS!!! Last night, he started wincing with his meds, so I hope that was just a fluke thing and that nothing is going wrong. I'm just going to kind of "forget" about it for now and hope that it was just an odd thing that happened.

The last couple of weeks at PT he has done well. He has done much better with catching balls and throwing them. He is riding on the scooter and able to switch feet. His endurance seems better (for the past 2 weeks) as he runs and switches activities.

Feeding...things have remained good with his feedings. He is still pretty much doing the same with things by mouth. Occasionally he will branch out and try something that amazes us. He ate some of his birthday cake for the first time this year. It was strawberry cake with real strawberry icing.

That's it for now. Please pray for Amanda, Eliah's home health aide...she has been very sick lately an din the hospital. We are praying for a quick and complete recovery. We also have many other friends that have ongoing health issues and family member and a dear friend that are healing from broken bones.

Love and hugs,
Chelle

Monday, May 2, 2005 10:31 PM CDT

I have been terrible about updating lately. We have had a couple of really challenging weeks...the whole family has...from work, to school, medical appts, therapies, blah, blah, blah, you know the score.

We had our appt with Dr. B (2ish weeks ago), where we talked about blending foods for Eliah (amongst other things). So far we have blended carrots for 5 days, corn for 4ish days, and now we are doing sweet potatoes. We have been holding off on the Miralax for several days to see if the foods alone would "move things through"...while on the corn, it seemed to work, but towards the end of the corn trial, things started to slow down. I had to give the Miralax again tonight and will continue until we try some other more fiberous foods.

Last week we had a nephrology appt (concerning Eliah's infusions). Dr. M said that if things were better with his bone density that we might be able to space the treatments out a little more. After seeing Dr. M, we went down to get the bone density test done. We also had to get an EKG and labs done that day (because of Cisapride).

I talked to the hospital today about the bone density test...they said that things looked better, but they didn't give me any numbers to be able to compare to last years. They were going to give the results to Dr. M and have him get back to me with what we are to do next. When we met with him last week, he questioned me about the color of the "whites" of Eliah's eyes. He asked if I had noticed that they were a blue/gray color. I said that I had noticed quite a while ago. This is a sign of osteogenesis imperfecta (brittle bone disease). I asked him what the difference between OI and osteoporosis was(which is what they *had* been calling Eliah's bone issues, up til now). He explained that osteoporosis is typically the dx if the child has broken bones that occur after they are school age. If they occur before school age (and then especially with the blue/gray eye thing) osteogenesis is usually the dx. I mentioned that Julie's eyes are the same as Eliah's and asked if we should get her bone density checked too. She has never had any breaks, and she is very active, but because Eliah's issues are what they are, I thought it was worth asking. They are going to get back to me about it at a later date.

I called about the muscle biopsy as well and the results are STILL pending. Grrrr. I am hoping to get those before next week, when we have our appt with Dr. A in genetics.

That's it for now. I will write later.

Hugs,
Chelle

Saturday, April 23, 2005 9:26 PM CDT

We started blending carrots for Eliah this week. So far it has gone well, this being the 4th day of it. I also talked to the pharmacist about combining some of Eliah's night meds to make a drug "cocktail" so that we could cut down on the volume of stuff that he receives before bed. He has always had a rough time with boluses (volume in his tummy), so I thought that if we reduced it, that he might do better. So far it seems to have gone a little better. I have been doing his carrots at about 8pm and then administering his meds directly after...the first day he winced a little, but then yesterday he did better. Tonight he said that he felt his meds in his mouth a little, but seemed to recover from it quicker than usual. It will be interesting to see where things go with all of this.

We got our new chickens this week. Eliah named his Lily.

I should go for now. Just wanted to update you.

Hugs,
Chelle

Tuesday, April 19, 2005 0:05 AM CDT

Today we had our appt with Dr. B. We asked again about the "meds in his mouth" sensation that Eliah has every day. She talked to Dr. D, and he said that even with the nissen intact, that sometimes the strong flavor of the medication can "sneak" past the nissen even though reflux is not occurring. Dr. B said that we would d/c the Zantac since it didn't seem to make a difference and because of what Dr. D said. I guess I was "okay" with the explannation that was made, but not thrilled about it. I questioned Dr. B about it saying that with the first nissen, he NEVER complained that he tasted meds (or anything else) in his mouth, until he started having trouble, indicating that the nissen was compromised. At this, she just said to keep an eye on things...that we would leave things as they are for now, since the upper GI showed things to be alright, but that if we noticed other symptoms occurring, that we would look more into it at that time. I don't know if the way I explainted it makes much sense to anyone else...I hope so, but if not, please feel free to ask me.

I also talked to her about trying to introduce some blended foods into Eliah's diet. We got the Vita-mix a while back, and have the ability with that to puree absolutely anything into liquid form. We are going to start introducing a different vegetable each week (via the g-tube), with the hope that we will see what foods his system will tolerate. Once we know that, then we can begin working harder on his oral tolerance. I'm not sure where this is going to go, but at least we are with Dr. B now and she is willing to let us try what we think is best...much different than Dr. M. I finally feel like I am being allowed to do something for my son...something that gives me back a little bit of my "parent-hood"...to do something good for him that could make a real difference.

I should go for now. We have a busy couple of weeks lined up. I will try and update as often as possible.

Hugs,
Chelle

Friday, April 15, 2005 11:40 PM CDT

Last weekend we had the opportunity to see the play Peter Pan. It was a wonderful performance. Eliah seemed to enjoy it, though it was a little longer than he expected.

This week there have been several different times when we noticed strength issues. We discussed it with his PT on Thursday and she said that she noticed it as well. She isn't sure why he is struggling so much with this...especailly how it effects his ability to use the steps.

We still haven't heard back about the muscle biopsy. We have about 2-4 more weeks before we should have those results. The next couple of weeks are going to be full of appts. One with Dr. B and we will once again address his ongoing reflux symptoms. I don't know what more can be done, but I am hoping that we can do something more. We have a follow up appt with the surgeon that did the nissen (Dr. T), and we have another appt with Genetics. The last time that we saw genetics, they weren't able to tell us much...hopefully now that we have learned a little more about some of his issues, they will be able to find something that will link it all together.

We have had two birthdays this week. Caleb turned eleven last Sunday (the 10th), and Julie turned two today.

OH!!! I almost forgot to write it down...Eliah opened the fridge today and was just standing there. I asked him what he was doing and he replied, "I'm hungry...I want something to eat". I was FLOORED!!! He looked around for a little bit and found the cottage cheese, pulled it out of the fridge and asked for a bowl. He sat with Julie, and the two of them chowed down on it. He has been asking for it the past couple of days, but not like he did today. It was wonderful!

I should go for now. Hugs to you and our thanks for all of your prayers!

Love,
Chelle

Wednesday, April 6, 2005 11:36 PM CDT

Hi. This week has been so nice with the warmer weather finally coming. The kids have enjoyed a lot of time outside. Eliah and Julie both got a little too much sun on their cheeks yesterday. I didn't expect that it would be warm enough for that yet. I guess the sun doesn't pay too much attention to the calendar.

Eliah is still complaining that his meds are coming up into his mouth. He seems very bothered by it every time we do his night meds...this is so frustrating. I wish he could just feel good. We will address this with Dr. B at our next appt.

We have been able to increase his feeding rate during the day and have gotten him up to 120cc per hour. I am amazed that he has been able to tolerate this! At night he is still only able to handle a rate of 48, but we are planning on trying to increase him by 1cc every 3 or so days to see what his limit is.

He has increased his oral intake a little. He has been very interested in cheese this week, and then today, he even ate 5 mini marshmallows...willingly!

That's it for now.

Hugs,
Chelle

Sunday, March 27, 2005 11:10 PM CST

HAPPY EASTER! We got back from the hospital at 2pm today (Sunday). Boy are we all on major sensory overload.

Last week I mentioned some of the GI problems that Eliah had been having. On Friday we went in for our appt with Dr. T. He removed the dressings and had his nurse take the stitches out of his leg. He also ordered an upper GI to check the nissen and it showed that it was intact. We had/have concerns as to why he continues to have reflux symptoms, so he referred us to Dr. B. to address those. Dr. B. said that even when the nissen is working, that some patients still exhibit reflux symtoms and that sometimes treating it with Zantac (along with his regular Prilosec) helps the kiddos.

We weren't sure whether or not he was getting sick, or if it was just from the reflux stuff. Since we started the meds, there has been some improvement. We are still waiting to see if it is going to make a big difference.

We are thrilled with our decision to switch from Dr. M to Dr. B. She is very personable, very in touch with her patients, and willing to think "outside of the box".

Eliah's infusion went well. His sats and blood pressure were reasonable...no major drops this time...with the exception of one incident. Last night, Eliah's sat monitor went off and was showing only 72%--not good. I also noticed his tongue moving around funny in his mouth. It looked "fat". His nurse walked in and saw all of this going on and asked if he had any history of seizures. I told her that he had, but that nothing had happened in 2 years. Things resolved after a few minutes, but I am not sure whether to add this in with the other seizure like stuff. For now, we are sort of letting it go, but watching closely.

I am whipped and really need to get to bed for now. I will try and update more later. My brain is fried.

Hugs,
Chelle

Thursday, March 24, 2005 10:57 PM CST

Hi. I have been very bad about writing. Things have been busy and mostly going smooth. Eliah's recovery has been going very well. His incisions are healing up well.

We have some concerns that he might be still experiencing reflux. We go in for the post-op follow up appt tomorrow with Dr. T, and I plan on asking if we can do an upper GI to check the integrity of the nissen. Hopefully all is well with it, but his feeds are bothering him and his meds (not just the *sleepy* meds) are making him sick. He says that they are coming up into his mouth. This would NOT be a good thing.

We accessed his port today at home for his infusion this weekend. It bled this time around, so I called to ask the nurse where we get our supplies and she said that it was most likely due to the fact that his last access was just 2 weeks ago.

It is amazing to me that it has already been 2 weeks since his surgery.

I will update when we get out on Sunday. We will be going to celebrate Jesus' resurrection and Easter dinner with one of the families in our homeschool group after getting out of the hospital. They were so sweet to ask us to join them.

I hope you all have a wonderful holiday. Please pray for Terri Shiavo. Pray for God's wisdom to fill the minds of the decision makers, as I personally don't feel that they are doing right by her. Pray that the Holy Spirit would move in their hearts.

Love,
Chelle

Monday, March 14, 2005 11:12 PM CST

Hi. Today went pretty well. Eliah is still having some pain in his leg, but with meds, he is handling it well. In fact, the doctors orders to keep him "calm" for the next 2 weeks is going to be a difficult task. To watch him, you wouldn't know that he just had surgery because he is running around the house with his IV pole chasing his sister, battling over toys. It's amazing.

Since coming home from the hospital, he has been struggling with some really bad attitudes. I think largely due to being angry about all of this stuff happening. I know he is tired of hearing the doctors and I talk about his medical stuff. It seems that with each hospital stay, his adjustment to being back home is harder. Please pray that we would deal effectively with this...not to be to hard on him...allowing for an adjustment period, but still keeping his attitude in check.

We called today but weren't able to get a follow up appt in GI yet. Hopefully I will hear something from them tomorrow. After making this appt, I will make the appt with the new (GI) doc...(Dr. B).

That's it for now. I'll write more later.

Hugs,
Chelle

Saturday, March 12, 2005 10:02 PM CST

Hi. We made it home!! We got here around 3pm. Eliah hadn't walked at all since Tuesday, before surgery, until we came home. He needs to use his walker...we are not sure for how long, but I would imagine that it will just be for the first couple of days. His leg just quivers when he puts weight on it from the incision and his balance is pretty off from laying in bed all week. His pain, overall, seems a little better than it has been.
He was thrilled to see Julie and she was equally as glad to see him...lots of hugs and kisses given back and forth. That was quickly followed by fighting over toys. You just gotta love kids interactions.

He got a little gaggy with his night meds, but otherwise had a pretty good night. We have to be very careful for the next 2 weeks to keep him "playing quietly". Not quite sure what that will look like once he starts feeling better.

Thank you for your prayers, gifts, love, and support. God has so graciously blessed us with wonderful friends and family.

Hugs,
Chelle

Saturday, March 12, 2005 8:15 AM CST

Hi again. This update is still from the hospital, but at least we now have a definate goal in sight. They are aiming to get him up to goal by noon. If he tolerates his feeds at 50cc/hr then we will be able to leave today and continue to cycle him at home. He tried eating a little by mouth yesterday, but got really gaggy. With all of the experiences in here this week along with the reflux over the past month and a half, I would imagine that it is going to take some work to get back to where we were before. It will come though.

That's it for now. The next update WILL be from home.

Hugs,
Chelle

Friday, March 11, 2005 11:18 PM CST

Eliah's feeds have been going well today and we were able to get him out of bed to stand once today as well. He is very unsteady on his feet and still in a good amount of pain, although if you didn't know him or how he deals with pain, you would swear that he was feeling fine. He has a high pain tolerance which can be both a benefit and a downfall. A benefit because he seems happy or at least comfortable most of the time...so socially, a very pleasant child. Where it is a downfall is when the doctors or nurses, that aren't as familiar, see him and think he is fine when he isn't.

So far tonight he is sleeping peacefully and I did get the doctor to order a different med for tonight incase he has a hard night again. Hopefully we won't have to use it, but at least it is there if he should need it.

We are hopefully going to get "sprung" tomorrow. As long as he continues to tolerate his feeds and meds, I don't think anything should stand in the way of that.

We removed the dressings from his muscle biopsy today. The cut is pretty big, but looks like it should heal well. It is in the shape of a smiley face...I told Eliah that all we needed to do was draw a pair of eyes. He thought that sounded kind of fun.

We have had lots of visitors during our stay which has helped to break up the time here, as well as lift our spirits. Eliah has so many people that love him. I hope you know how much we treasure you and realize how helpful your prayers are.

I will update again soon...hopefully from home the next time.

Hugs,
Chelle

Friday, March 11, 2005 6:45 AM CST

The past two nights have been rough. Night before last he basically didn't sleep at all, because every time that he would get to sleep he would startle himself awake and then while awake he would talk about how the walls were leaning. We started him on Toradol for the pain (the "other" med that I mentioned in my last post) which seems to help pretty well, but his pain at the end of the med is intense, which would explain last night. We haven't been doing the morphine at all for the past two days because he was starting to have too many side effects from it that were outweighing the benefits. Last night though we tossed around the idea of trying it again, but decided not to. I asked if there was another med that would have the same pain relief as the morphine but possibly less side effects, but the nurse practitioner said that all we could do was Toradol, morphine, and tylenol. I don't know why they are unwilling to try something else. His nurse last night was upset to with the amount of pain he was having and the lack of relief that he was getting from the "allowed meds". I plan on talking to the surgeon about it today and seeing what he says. He tends to be more merciful. We'll see what happens.

We were only able to get Eliah out of bed to try and stand once yesterday. He still hasn't put his feet flat on the floor yet...we will try again today. I think part of it has to do with pain, but I think the larger part is fear. I got him out of bed to hold him for the first time yesterday...it was painful for him, but I think he enjoyed it...I know I did. I also changed his diaper by myself which doesn't sound like such an accomplishment, but up until then it always took two of us to do that or just to turn him. So, we are making small strides every day.

Two muscles are getting really strong...they do every time that we are in the hospital...those muscles are the whiny muscle, and the bossy muscle. Geesh can he whine and boss everyone about. His pointer finger gets pretty strong too, regardless of how tired he is.

The surgical residents came this morning and said that they are going to lower the IV fluids and continue to increase the g-tube feeds. They are only increasing him by 5cc (a teaspoon) every 6 hours to make sure that he can tolerate it. So far so good.

We also talked to the other GI doc yesterday and we are going to switch over to her. She is more willing to work with us than the one that we have been with. Please pray that all goes well with the transition. It is going to be rather awkward, as they work in the same office, but it is a necessary move and I think a positive one.

I think that is it for now. I will try and update later.

Hugs,
Chelle

Wednesday, March 9, 2005 6:57 PM CST

I'm sorry to be so late in updating Eliah's page. As you can well imagine, he's been really sore and has needed all of my attention. The surgery went well. We were told to expect a 3.5 hr surgery, but it ended up only being about 2.5 hrs. A while back...sometime last year, his neurologist had said that he was going to order a muscle biopsy to check for mitochondrial disorder...the neurologist and the surgeon talked the day before and worked it out to have it done at the same time. They did both muscle and skin...I'm not quite sure why they did the skin portion, but will ask about that either tonight or tomorrow. The results for those tests won't be back for 6 to 8 weeks. The surgeon said that when he got in to do the nissen, that the previous surgery had come completely apart and that you couldn't even tell that anything had been done before.

He came back from surgery with an NG tube in which ticked him off. He hates being a "hose-nose". They also had to put in a periferal (sp)line because they said that the amount of fluids they have to push during surgery has the potential of damaging his port. Those were taken out today. His central line will remain accessed until we are discharged.

They have done a pretty good job this time around of managing his pain. He is receiving morphine every 3 hours and have said that they will at least continue that until they start getting him up and around a little. His heart rate for the most part has been pretty good. He had a little trouble for a couple of hours with his respirations and needed constant reminders to breathe. Tonight both of those are okay, but now his sats are off (hovering around 88 quite a bit). He is having some trouble with startling and nightmares which I think are a result of the morphine. I spoke with the nurse and surgical nurse practitioner about it and they are going to try another med along with the morphine to try and space the morphine doses out while still handling his pain. I think the nurses are getting a little tired of my questions and research (I was questioning the med that they wanted to use with the morphine b/c of something that my Nursing Drug Handbook said) and they seemed greatly irritated by it. Oh well...I would rather them be irritated, than to have a drug interaction. Turns out the drugs are okay, but I am still glad that I checked.

He is having belly pain tonight which we are keeping an eye on. Tomorrow they will try to begin some feeds through his g-tube. They also have plans tomorrow (I think) to try and get him up and possibly have PT come down to get him to move his legs...they have stayed tightly drawn up to his belly since surgery. With his belly hurting and his leg hurting from the biopsy, there are more than enough reasons why moving would be a good idea.

We had several visitors today. It helped to lift Eliah's spirits even though he didn't really respond much.

That's it for now. I will try to type tomorrow with anything that I forgot today.

Hugs,
Chelle

Sunday, March 6, 2005 11:45 PM CST

Hi. Well...the time is coming closer, and as it does I am feeling more anxious. I know that this is the best decision for him...the only decision really...but surgery is scary.

I am praying, and ask you to join me, that God would bless the surgeon's hands as he prepares to operate on Tuesday. That his hands would be steady, and that he would have clarity of thought. I pray as he gets in there, that it would be clear to him, exactly what needs to be done and the best way to approach it.

We have also made the decision to change GI docs. I have been talking about it and thinking about it for a long time now, and it is time to make a move. We feel that our goals, and plans for accomplishing them, are very different from the plans of his current GI. We thought about leaving the GI dept altogether and taking things back to his special needs ped, but with the advice of a friend have decided to try and stick it out with the same group, but a different doctor within the group. We have had some interactions with this other doc and like her. We also know of others that she sees, and they have said that she is very good and seemingly better about working with the parents. This is going to be a very touchy situation if we are able to switch, so again I ask that you would pray for everyone involved in this...that God would have his way and that the best decision for Eliah would be made.

I am going to go for now...it's late and I'm tired. We finally updated the photos on this page...go click on the photos button to see them.

Hugs,
Chelle

Thursday, February 24, 2005 3:37 PM CST

Darn it...I just typed this once and the computer decided that my day just wasn't interesting enough and deleted it! Technology!

Anyway, we got some good news today...we found out that Eliah's blood type and mine are compatible, so I will be doing a directed donation for his surgery. I know that the blood bank is much safer than in the past, but I still would rather he get it from family as a first choice.

His surgery will be done "open" this time, so the recovery be much harder than the first time around, so his PT and OT are working with us to help make his recovery go as smoothly as possible.

During his PT session today we noticed that his strength didn't seem the greatest...while going up the stairs (we are working on alternating feet) he needed to pull with his hand/arm in order to make it up the stairs. He also wasn't able to throw the balls as well as he does sometimes. The PT and I agreed that he is still such a puzzle...why sometimes he is able to do so well and others he struggles so much.

Tomorrow we go back to the orthopedic surgeon for a re-check on his leg (from the broken femur) and his forearm (fusion of the bones). I am hopeful that they will see that his leg has gotten stronger and that the break is healed better than last year because of the bone treatments. And I would imagine that they will say the same thing as last year about his forearm...that there really isn't anything that they can do to change it. I wish that they could, but we have kind of settled for the fact that unless God changes it, this is the way it will be. It is not the end of the world...he can still use it, it will just take some adapting things for his use.

We have his next infusion scheduled for the 25th of March (10 days after he gets out from his nissen surgery). Then we will have his appt with the nephrologist (bone doctor) in April to see where things are going with the bone treatments and will go down for repeat bone density testing after that.

Things are going well with Eliah's home health aide...she is wonderful. I don't know if I have shared her name or not before, but I will so that you can pray for her too...it is Amanda.

That is it for now. I will try and be better about posting.

Hugs,
Chelle

Thursday, February 17, 2005 2:19 PM CST

Well, things today (at the surgeon's) went pretty well. He agreed that Eliah's reflux is too severe to let things go. He said that we have two options...one, to re-do the nissen or two, to do a gastric bypass. The second option kind of surprised me as I didn't know they did this on children, but as he explained it a little more, it made more sense. Either one would have to be done "open" (big cut) rather than laporoscopically as his first nissen was done. The gastric bypass done on adults reduces the stomach to about half it's original size, still leaving a place for small amounts of food to accumulate. When it is done on children, the esophagus is connected to the intestines and the stomach is kind of "off to the side" (connected at a lower point so as to be able to still produce the gastric juices) but this leaves no place for food to "pool" (don't think that this is the same word that he used, but basically meaning that if this were done, he would never be able to get the feeling of a "full" stomach, because things would just continue to move through). He said that he thinks that the nissen would be the better option (Scott and I think so too) to start out with. If more needs to be done later, then it will probably be the bypass, but for now this is what we are going to do. The surgery will be on the 8th of March and will be done here in Columbus...we do not yet know the time.

Please pray that all goes as well as the first time, but that it will last longer this time around. The first one lasted for two years.

Thank you so very much for all of your prayers and support. We love all of you dearly!

Hugs,
Chelle

Monday, February 14, 2005 9:44 PM CST

Hi. I'm sorry that I didn't write sooner. I know that I said I would update after our appt on Friday...I am aware that my slowness in writing has worried some of you and I apologize for that. It just took a while to digest and figure out what to do with some of the information.

His pain lasted until late morning on Friday, but then eased up and has been better since. They repeated the upper GI to see if they could find the reason for his pain and tummy drainage. They suspected that it was due to intussusception (where the gj-tube would have more or less gotten stuck in the folds of the intestines). By the time they did the test though it had wiggled itself loose and he was doing fine. They told us that at any point, if he had pain, to bypass the ER and just come right into radiology...that they would do another test to see what was going on. So far we haven't had to go back. (Yay)

His iron levels and iron binding capacity numbers were within normal limits.

As far as the GI's opinion on what should be done with the nissen, she told me that we had several options. The first is to leave things the way they are (nissen undone) and treat the reflux with medication. The second option is to re-do the nissen, but not as tightly...still treat the remaining reflux. The last option she gave us is to leave the j-tube in place and treat the reflux, while allowing time to grow before deciding what to do. I had my opinions about this, Scott and I talked and agreed on what we thought needed to be done, and then just today I talked to the ped and she agreed with Scott and I that the nissen needed to be redone and needed to be redone completely because anything less would put him at tremendous risk for aspiration.

Scott, the ped, and I all agree that while we would like to have him eating by mouth, the most important thing right now is his health (emotional, physical). Whatever eating by mouth he does is AWESOME and we are excited about it, but that if he still needs the tube to do the majority of his feeds or to make up the difference, that is fine too. We are all interested in the overall health of the child...the whole child...The GI has more of her focus on oral feeds and not as much on the overall picture.

The ped also said that if we do not get the response from the folks here in Columbus that we need, we will be going elsewhere to get his surgical needs met (Cincinnati Children's).

Please pray for the best decision to be made for him.

Thank you!

Hugs, Chelle

Friday, February 11, 2005 7:40 AM CST

We had a very bad night last night. Eliah woke and was up most of the night screaming and crying because of pain in his belly. He was also gagging and wretching quite a bit. Of course, he has had nothing in his tummy (food wise) so all he was able to throw up was bile, but this from a kid that hasn't thrown anything up for approx 3 years. We kept him hooked up to his drainage bag the rest of the night, and in the first 5 minutes that he was hooked up, we got 50cc of nasty fluid. Between 2am and 5am we got an additional 50cc. We debated whether or not I should take him to the hospital, but each time we would get ready to go, things *seemed* to settle down a little with his pain. Finally at 5am we were ready to conceed, but decided to hold off and just get ready to go to the hospital (for his appt at 10) and maybe show up a little early for that. He is still having belly pain this morning, but it seems to be a little more managable. We ended up stopping his feeds several times and then completely at 5am. We weren't sure if there was possibly an issue with the j-tube? We will ask about that today.

I will try and post later today with info about the appt. It probably won't be until late tonight though.

Thank you for your prayers.

Hugs,
Chelle

Thursday, February 10, 2005 3:43 PM CST

Yesterday and today have both gone pretty well. We have noticed some changes since starting the j-tube feeds...the first, of course, that he isn't getting sick. Secondly, he has a little more energy and seems to just feel better over all. His PT noticed this as well. His coloring is still way off (very pale skin and dark circles) but it is good to see him feeling better. His bm's are different as well...less mucousy. It seems to me that he is *using* the food better. This will be good as we prepare for surgery.

We have our 4 month Cisapride visit tomorrow and will discuss some of the above things with the GI then.

That's it for now.

Hugs,
Chelle

Tuesday, February 8, 2005 11:48 PM CST

Today went pretty well. Last nights feeds went better and he seemed to sleep better than he has in a while. We have an appt with the surgeon next Thursday (the 17th) to schedule his second nissen. Until then we are to continue with the 15 hour feeds and NPO. Early this evening he started saying that his tummy was "full". Seeing as he hasn't had anything in it, I assumed that he meant it felt bloated, so I hooked him up to his drainage bag and got quite a bit of air and tummy fluids. It seemed to help him feel better.

Amanda started today and we are thrilled with the decision that we made. She is really sweet and already seems to care so much about Eliah.

That's it for now.

Hugs,
Chelle

Monday, February 7, 2005 9:21 PM CST

Last night, after Eliah threw up, we decided to leave him NPO (nothing by mouth) until we talked with the doc. Early this morning I started making the phone calls to the ped, GI, surgeon, yadda, yadda. I was able to get the upper GI bumped up by about 3 hours and it showed that the nissen is indeed failing. The radiologist barely even got 5cc in before Eliah began refluxing freely. Next we went to GI procedures to get his labs drawn. The blood draw went well (we accessed his port at home on Sunday so that he wouldn't have to get "stuck" at the hospital). Then we went down to interventional radiology get a g-j tube put in so that we would have a way to feed him until they schedule his next nissen surgery. My guess is that it will be sometime within the next 2 weeks. Until then, we cannot do anything by mouth. This is really confusing for Eliah since we have been working for so long on getting him to eat and drink, and now that he has certain things that he likes (water, and "bready" textures, and most recently hot dogs and cooked carrots) we are having to tell him, "no" when he asks for something.

He is back on 15 hour a day continuous feeds.

That's it for now. I will try and update tomorrow. Amanda starts tomorrow too, by the way. Please pray that we all get to know eachother well and that it is a "good fit".

Hugs,
Chelle

Monday, February 7, 2005 9:13 AM CST

Well, the "other shoe hit the floor" last night. I guess life just wasn't exciting enough around here. Eliah threw up! Normally that wouldn't be such a big deal (with any of our other kids), but with him and the nissen wrap that was done several years ago, throwing up *should* be an impossibility...and up until last night, it was. We had a feeling that things were "going south" with the nissen since he has said numerous times that his meds are "cold in his mouth" as we give them at night, and with some of the choking episodes that he has been having over the past several weeks, but now with this...well needless to say it has us a little worried. We were scheduled to go in for labs (to see why his hemoglobin is low), and for an upper GI to check the integrity of the nissen. I am pretty sure that they will find that it is quite compromised. Obviously the concern with this is that he will aspirate as he refluxes (this has happened 2 times in the past). I am not sure if we will be coming home from the hospital today or if they would see the need to something right away. I hate like heck for him to have to have another surgery, but at the same time, surgery is looking a WHOLE lot better than aspiration pneumonia. I will try and update later today, if I can, to let you know what happens.

On a happier note...we have a new home health aide! We just hired her this weekend. Her name is Amanda and she is very sweet. We are *hoping* that she will be able to start tomorrow, but obviously if he has surgery, that would mess up her start date.

Just pray. You know the score.

Hugs,
Chelle

Monday, January 31, 2005 3:02 PM CST

Lots of stuff to tell you...First thing is about the reflux episodes. He had "reflux issues" from the 24-27th of Jan (Mon-Thur night), I called the GI and she is in the process of ordering the pH probe. Then on Friday and Saturday he was episode free. On Sunday when I went to administer his meds he said that they were "cold in his mouth" again. Grr. I called and talked to one of the nurses (that really listens well to what you tell her) and was able to to communicate everything that has been going on with Eliah and she said that she would share it with the GI. So many times, the nurses will listen enough to take a note, but not well enough to really hear what is going on with the child. Thankfully this was not one of those times.

Things that I shared with her were:

his coloring is off...he is very pale and has dark circles. This has been noticed by friends, grandparents, Scott and I, OT, PT. When I mentioned this, she did say that his hemoglobin #'s were low the last time they did a CBC. I am going to have them check it when we go in for our next appt, if not before. He has also been more "sluggish" than normal.

He has "snotty poop" (kind of gross, but descriptive of how it looks)...it is very mucousy. This I have noticed for the past several weeks...possibly from his new formula? Or maybe from malabsorption problems?

His eating (by mouth) isn't as good as we would like to see. He will eat puffcorn, bread, popcorn, potato chips, but he is not branching out as much as we would like. He is obedient to try things if we tell him to, but is not motivated to try them on his own and still struggles with numerous textures.

We are thinking about stopping the Cisapride (Scott and I would like to anyway) because we are not sure that it is making much of a difference in terms of helping him.

Other news...We are still without a aide/nurse, but have heard (just today) from a friend of ours that would like to cover the nursing hours. That means that Scott and I will actually be able to go out on a D-A-T-E!!! Gasp! I am also doing interviews with several independant providers this week to replace our aide. We have now been without her for 3 months and would really appreciate having the help again. This is my first time NOT working through an agency, which is kind of scary. Please pray that God would make it clear, who is supposed to be here with Eliah...that we would find someone that would work well with the whole family.

Something wonderful and exciting happened this weekend, but before I tell you what, let me give you some background info...6 years ago I went to a women's conference with friends from our church. During one of the prayer times there, they called forward the women that were struggling with infertility, so of course (having had that issue for 6 years after Caleb's birth) I went and got prayer from two women, Gretsie Ames and Judith MacNutt. The following year I went to the conference again, this time with Eliah who was nearly ready to come, and shared with them the prayer of the previous year and of his struggles inside, but mostly of God's merciful hand and faithfulness to bless me. They had me come up on the stage and then all of the women of the conference prayed with them again to thank God for His answer and also to pray for his protection for Eliah...again Judith was there with us as well. When he was born, we made a trip to Florida (where Judith lives (with her husband Francis) and where they have Christian Healing Ministries) for them to be able to see the answers to their cherished prayers. Again we prayed together. Two years ago Judith came to Columbus again and we got to pray together once more. What a blessing she has been to us. Then, at the end of the week last week, I received a call from a friend telling me that Judith was going to be in town again this weekend, but I didn't think that we would be able to see her. As it ends up, we did go...just Eliah, Julie, and I, but when we got there, Judith's team escorted us up onto the stage where Judith was, as a testimony of God's faithfulness to bless women with the gifts and answers to the cries of their hearts (children). It was such a joy to see her again and to be able to be a blessing to others. Afterward, her team and then later she prayed with us, and others came up to me and asked that I pray with them for God's touch.

We had our picture taken together...Judith said that she would see to it that we got a copy of it as well...I will post it as soon as it arrives so that you all can see too.

I'm sorry for such a long winded story, but it truely is such a blessing to be able to share these things with you. Please know how much we treasure your prayers and know that God answers prayers...sometimes not how we expect, but He always answers and all of your words offered up to Him are sweet.

Love,
Chelle

**Just got a call. We are scheduled for an upper GI on Monday and for labs to see about his iron levels. Pray that this yields answers.** Thank you.

Friday, January 28, 2005 12:52 AM CST

I heard back from the GI today and she said that we are going to do another pH probe to check for reflux. As much as we hate this test (I cried when I heard that we had to do it again...this the 5th time), we know that it's given the best results of anything else we've done so far. Please pray that the results are accurate so that we can know what to do to make things better for him. Last night was the first night this week that something hasn't come back up that we know of.

Other than that, things seem to be okay. He didn't do quite as well at PT yesterday, but did still participate. Today we went out to lunch with some friends and he ate some (soft) garlic bread and even asked to try some "cake" (really it was a brownie, but he insisted that it was cake). He ate what would amount to 2-3 bites of the "cake", and seemed to enjoy it. He also enjoyed playing with the water in his cup and painting the table with the water soaked napkin.

That's it for now.

Hugs,
Chelle

Wednesday, January 26, 2005 11:10 PM CST

Some bothersome things have been happening with Eliah lately and we aren't quite sure what to think about it. I mentioned that we were cutting back on his overall feeds to *hopefully* increase his hunger. So far, that hasn't proven to be such a successful venture. We are giving 3 cans of Pediasure with fiber and 1 can of Compleat Pediatric...what goes into him during the day is dependent mainly on him, but we have been trying to find creative ways to make it sound like a really fun and exciting option. Most of the time he is obedient and does what we ask (puts food in), but then struggles with various textures. His intake mostly consists of homemade bread, crackers (occasionally), popcorn, and puff-corn.

His coloring is off, his eyes are dark (looks like he's been in a bar room brawl), and his energy is down (Nannie noticed it and said something about it when she was visiting). He has not been sick, so the only thing that we have been able to conclude (so far) is that maybe he isn't getting enough nutrition?? He also seems to be having issues with absorbing all that is in his feeds as is obvious in his bm's.

Another concern that we have had (and I hate to think that this might even be a possibility again) is that his reflux is somehow getting past the nissen. We aren't sure if it has loosened up or what. The other day when I was giving his meds, he said, "ooh, that was cold in my mouth". The problem?...I had given it through his g-tube. Then the next day he began choking pretty bad during his nap and it sounded like he was refluxing (I could hear things "coming up"...or at least it sounded like that). Then that night, he had requested that Daddy sleep with him, and around 5-6 am, he had another episode of reflux. Thankfully Scott was there and could help him through it. I must admit that this is one area that we *thought* we had seen the end of. The last we checked it, the nissen was 100% effective and we so don't want to let go of that number.

Please pray about these things. We know that God is good and that nothing about what is going on with Eliah is out of His control. We just really want for him to be able to "move on" with things and "get better". Things had been going so well for a while...now I feel like that "other shoe" is slowly dropping to the floor.

We love and appreciate each one of you so much. Thank you for your faithfulness.

Hugs,
Chelle

Thursday, January 20, 2005 10:56 PM CST

Hi. I hope you are doing well. We have had a mostly uneventful couple of weeks. Feeds are still 3/4 Pediasure and 1/4 Compleat. The GI is leaving things alone with that for now. He seems to have adjusted to this strength now...his bm's are different...I think he might not be absorbing everything like he should, but I plan on watching for another couple of days before I mention it to the doc.

Medicaid is giving us more grief...a while back we had trouble with them because they didn't want to pay for certain meds, then they gave us trouble over paying for his feeds, but that got resolved. Well, now they are saying that they are denying payment for his feeds again and we will have to go to a state hearing to appeal this decision. Grrr. It will take approx. 90 days to get this resolved and I have obviously been concerned about how to get his Pediasure paid for in the mean time. I spoke with Columbus Rx today about it and they said that as long as I was doing everything that I was supposed to, that they would still supply his formula...even if they don't get paid...that it wasn't something I needed to worry about as long as I was doing my part. I am SO thankful for their compassion!!! They said that Medicaid occasionally gives people grief about formulas and that if we were being denied, others would be too.

As far as his oral intake...he is still doing certain breads (chips, popcorn, tortillas, bread (with raisins), waffles)...we are working with his OT to do food chaining...branching out within one food group. I don't know if it makes sense, the way I described it.

His strength and balance continue to improve. He has overall weakness in his right side (trunk muscles) so we are working with him laying backwards on a bolster, where he has to "pull" himself up to try and build up his abs. We have also learned some tricks to get him to exercise core muscles without it seeming like work...different games that are fun for him, but still strength building.

The scar on his face is healing (the Julie mark he received).

I think that's it for now.

Hugs,
Chelle

Saturday, January 8, 2005 2:51 PM CST

Sorry...it has been a few days. I haven't written because things have been going relatively well. We have kept his feeds like they were the last time I wrote and it seems to be serving him well.

We have been to OT and PT this week and he did well with both of those. He is learning to go up and down stairs alternating feet and is doing pretty well with going up. He still has to be reminded, but is learning. He is also working on jumping and standing on one foot. Both of the therapists are working on balance, and I am glad to say that things are improving with that as well.

Julie was mad one day and Eliah got too close so now he has a very large scratch on his face. We are hoping that it will not scar, but that is yet to be seen. It was a bad scratch.

I think that's it for now. We have to call the GI on Monday as her office called and left a message on Thursday that we didn't pick up until today. I am assuming that it is regarding his feeds or his next EKG. We need to schedule that soon. I have to check with the orthopedic doc too...it has been a year since his broken femur and he wanted to recheck it.

Bye for now.

Chelle

Tuesday, January 4, 2005 10:48 PM CST

Last night went better. He tolerated the feeds and wasn't in as much pain. He still said that his belly hurt, but otherwise did well. I told the GI and she said to continue for now just doing the 3/4 Pediasure and 1/4 Compleat. When I was preparing his feeds tonight, he started whimpering when he saw the Compleat can and said "no, no...not that one". He is doing well though (so far).

I will update again as we see where things are going with him. We have OT on Wednesday and PT on Thursday this week. Please continue to pray that his tummy heals or adjusts.

Hugs,
Chelle

Tuesday, January 4, 2005 12:20 AM CST

Last night was VERY difficult. Eliah woke around 1:30am and was screaming in pain...saying that he had to "poop", but it was obvious that he was struggling to do so. He was also gagging and retching horribly. It was so bad in fact that I seriously considered taking him to the ER (this is typically NOT something that crosses my mind). I was concerned that maybe it was a bowel obstruction or something. His whole body smelled like poop...even his breath. Within the next couple of hours he had approx. 6-10 bowel movements...all very painful. We considered just giving water (in his pump)for hydration, but decided to give him total gut rest for the remainder of the night...with the exception of his Chloral Hydrate. After he got his meds again he finally was out cold and stayed that way until morning.

He complained all day that his belly hurt. He was quick to point out that his stomach didn't hurt, but his belly did (and pointed to his belly below his navel, indicating his intestines). I was impressed that with his age and understanding, that he was able to distinguish between them. I contacted the GI and expressed concern that it was the new blended food formula. She said to cut back on it, but not to stop it completely (to do 3/4 Pediasure and 1/4 Compleat Pediatric). He cried before going to bed that he didn't want his feeds..."They make me sick again". Poor little guy. I tried to reassure him that tonight would be better. I am supposed to let Dr. M know how he does in the morning. So far tonight it is going alright, but this is about the same time last night that things started getting bad.

Please pray that all will go well for him. We would really like to make the transition from Pediasure to blended foods, but certainly not if it is going to cause him pain.

You are all such a blessing to us. Knowing that we have others praying along with us helps to make the struggles not seem quite as lonely.

Hugs,
Chelle

Tuesday, January 4, 2005 12:20 AM CST

Wednesday, December 29, 2004 8:51 PM CST

We had one of those "break your heart" moments tonight. First I need to fill you in on what I have told Eliah about where he came from (don't worry...it's not really about the birds and the bees...*giggles*). In the past when he has asked me where he came from I tell him that he came from my belly. Then he asks, "where was I before that?" I just tell him that he came from God's heart. Thankfully that answers his questions enough for now.

I was sitting on the floor giving him his meds, and he started asking me about why Julie had been sick (she just got over a cold). I said that Julie got sick just like Mel got sick and Daddy and Mama got sick. He asked why it happened, so I told him that we just "got a germ". What he said after that and what he did was what broke my heart. He said, "When I got sick...after I came out of God's heart...when I was in your belly...I cried. It make me really sad." As he was telling me this he started crying.

Now I'm gonna get deep...so if you don't want to read it, you can stop here. I just wonder how much there is about this world that we don't understand...by we, I mean those of us who have never had any reason/need to pay attention to the *deeper* things of God and the spirit "realm". I have always thought that babies, being so innocent and unable to ignore things, are more in touch with that, and now I also wonder how much these dear ones...the little ones that have been so sick...if maybe they don't have the same understanding of things...a special closeness with God that others might not be privy to.

Okay...I'm done. I just wanted to share that. Eliah and I both sat and had a good cry together.

Hugs,
Chelle

Monday, December 27, 2004 1:05 PM CST

Eliah's EKG, Cisapride 2 month follow up, and infusion all happened the weekend of the 17th December. The EKG looked great. We went from there to admitting where we got signed in for our stay and Eliah and Julie got a stuffed animal from the nice admitting people. We did his port access at home on Thursday night, so he DIDN'T have to get stuck AT ALL this time at the hospital!!! Now that's saying something. We only had one time (third day) when the nurse wasn't able to get good blood return and had to press a little on the needle in his port, but otherwise things went well with that. *yay* On with the rest of the schedule...after being admitted and getting settled into our room, they drew some labs, and we were off to see Dr. Mousa for the 2 month follow up on Cisapride. She asked how things had been going and I said that I thought it was helping a little, but that I was somewhat disappointed with the results of the med. I had hoped that it would make more of a difference with him. She decreased his feeds from 10 hours at night to 8 hours. The idea behind this is obviously to make him *hungry*. He still has trouble distinguishing between hunger and pain as he still has a lot of belly pain at times and would rather have his drainage bag hooked up than to eat. Dr. Mousa expressed concern over the possible drug interaction between Cisapride and Pamidronate (infusion drug). There are some pretty serious heart side effects with both of them, so she had us stop the Cisapride during the infusion and had them watch his heart closely. He usually has a very low bp during his infusion and that is obviously a concern.

After his appt with Dr. M, we went back and started the infusion and about an hour into it, she came back and said that she might have them stop the infusion and wait for 2 days before beginning it again b/c of the medication conflict...needless to say I wasn't pleased...of course I don't want Eliah to get sick from the meds, but I also didn't want his bone meds messed up (and I didn't know what stopping them would do), nor did I want to chance running into Christmas with his infusion. As it ends up, they just watched him more closely (bp and pulse ox every 20 minutes) and let us continue on his schedule. We tried really hard to "press the food issue" during this stay again, and it *seems* to have helped some. He ate a tiny bit at every meal while in hospital...sometimes with a fight and other times more willingly. Since coming home, he is a little more willing to try too. We'll see where this leads.

Scott had been out of town for 2.5 weeks before the hospital stay and wasn't going to get back until Saturday night (the 18th), so we "farmed" out all of the kids (and care of the chickens) to friends, family, and neighbors. The big kids went to Nannie's, Julie went with our friend Linda from church, and the neighbors took care of the chickens. Scott came home on Saturday and came straight to the hospital after leaving the airport. He is now an instrument rated pilot and soon will have his commercial rating. Mel and Caleb spent an intriguing weekend of television watching together while Melody tried to recover from her cold (poor kid had to wear a mask for the whole week preceding Eliah's stay), Julie did wonderfully at Linda's.

While in the hospital we heard of a friend of ours from Church that was in the hospital, so on Saturday evening (right before bed) we went up to say hi. It was sad to see him there, but I think that seeing a familiar face must have been some comfort. We also ran into another "infusion kid" that we met some time back. She and Eliah are on the same schedule.

Our nurses were really good this time around. Many of them we know from past stays, so that is nice. We found out that several of them are believers.

Now for this past week...DO YA THINK IT WILL SNOW??? GEESH! The snow and the ice have been awful (although...even I have to admit that it is pretty to look at). Thankfully we were not among those that lost power. Many family members and friends did though. The chickens are MAD about the snow...they sure will be glad when spring comes.

We had a nice Christmas. I hope all of you did as well. We spent Christmas Eve with Dad and Charlotte, then went to church, and to Mother and Sid's after that where Kelly and all of us stayed the night. We all spent the day together on Saturday (morning at mothers and afternoon at Grandmas). It was so nice to see everyone.

I should go for now. I have bread baking and it's about time to take it out. Boy does it smell good.

Thank you for all of your prayers. I will update again soon. I hope my note finds you all doing well.

Hugs,
Chelle

Saturday, December 11, 2004 4:48 PM CST

Hi! I want to start with a prayer that your Christmas and this new year will be filled with the joy and hope of Jesus. I pray for new things for you and that God would be in the center of them all and show you His perfect will as you step out in faith.

We are doing well. Eliah has been on the Cisapride for 2 months now, and has had NO ill side effects that we have noticed. Praise God! We have noticed some positive changes...him saying that he was hungry, asking for different foods, trying bites of new things, and even trying different tastes in drinks. We also notice some things that haven't changed as much as we had hoped...he still gags some with his night feeds and still struggles with his bowels. I had set my hopes pretty high and was warned by his pediatrition to be cautious about doing that, but I just couldn't help myself. We will be meeting with the motility specialist next Friday (the 17th) and will ask her about those things. We are currently at his maximum dose on the Cisapride though, so I don't know how much more she can do.

We got the "go ahead" from the dietition and motility specialist to begin switching him over from Pediasure with fiber to something called Compleat Pediaric...it is a "blended" food (contains turkey, various fruits and veggies, grains, etc)...we are *hoping* that we can get him off of formula and onto typical foods via his tube. My thoughts are that if we can do this, that things (in his body) will "work" better and that it will challenge his system a little, therefore preparing him for eating by mouth. It's kind of a stretch, but one I think is well worth trying.

After we see what his tolerance level is for more typical foods we are going to try blending fresh foods on our own and get him off of the canned stuff altogether if we can. In preparation for this we purchased something called a Vita-mix blender. It is an enormously expensive piece of equipment, but very good for the purpose of blending foods for feeding tubes. Our other one just didn't quite do the same job. Thankfully we have been able to get some funding to help cover the cost. The first week that we had this, Eliah kept asking, "Could you make something in my new machine?". Each time that I did he would try it. Sometimes he didn't have very much of it, but just the fact that he was willing to try was a HUGE accomplishment. One last thing on the eating front...on Tuesday night of this past week, Eliah ate 10 (dime size) bites of scrambled egg with ham (shredded in his new machine)! He got rather gaggy after his 8th bite, but he took a break and went back to ate 2 more bites. We were so excited!

We are scheduled to go in for his next infusion this coming Friday (the 17th). He will be getting an EKG done, have a Cisapride 2 month visit, and have his infusion all during this stay.

Our friend Izzy that we have asked you to pray for (4 organ transplant kiddo)...she is doing well and actually got discharged from the hospital this week! She will still have to be at the hospital frequently and may have to be re-admitted, but it is just such a HUGE step to be allowed to leave. Please continue to pray for her.

That's it for now. I will write more later.

Hugs,
Chelle

Saturday, November 20, 2004 0:10 AM CST

Hi. We started the Cisapride last month, and so far all is going well with it. We started out on the lowest dose and they are gradually increasing it to see what his tolerance level is. He has had 2 EKG's since starting the med. The first one turned out well, so they increased the dose to double the initial dose. He said for the first time (last week) that he was hungry!! He asked for popcorn, so we made it and he ate about 10 pieces before getting gaggy. A couple of days later, we went to the grocery store and he said that he wanted bologna, so we bought that and he and Julie made a game of eating it. She is a wonderful little source of encouragement for him...not only in terms of someone to play with, but she really helps him with the food stuff. He has even asked for bites of her breakfast cereal a couple of times last week. He is trying more stuff at each meal/eating opportunity and even trying different tastes in drinks (milk, orange juice, and even iced tea). He still is not eating much in terms of volume, but at this point, with the strides he is making with tastes, I don't really care. Volume will come in time. I am excited to see where things will go as we continue on the Cisapride. I think he feels better, and like things are possibly moving through better.

We noticed this week in PT that he seems to have some strength issues on his right side. We aren't sure why, because up to this point, all of his issues have been on the left side (broken and fused bones). The plan is just to work a little harder on the right side to try and improve things with that. I think that's it for now. I'm tired.

Chelle

Thursday, October 28, 2004 10:29 PM CDT

Well, we found out today why our start date for Cisapride was being delayed. As it ends up, they had been trying to reach us for about 2 weeks, but our telephone "call answering" feature wasn't working properly and we weren't getting the messages. Gotta love technology (grrrr). Anyway, they called again this morning and we got everything worked out. We picked up the Rx and began Eliah's first dose at 1:00pm today. He will be taking the lowest dose 4 times a day to start. Then in 6-8 days he will have an EKG done. After that they will gradually begin increasing the dosage until they reach the appropriate dose for him. With each increase, he will get an EKG done to keep close tabs on his heart.

His feeds are back to his usual rate again. He is still complaining of his tummy hurting, so we keep a drainage bag on hand at all times incase he is in pain. Otherwise things are going well for him.

That's it for now.

Chelle

Sunday, October 24, 2004 9:26 PM CDT

Hi. We still have not heard what our start date for Cisapride/Propulsid will be. I have to call this week to find out about that, as well as to see when his next infusion is scheduled...if it follows the "usual protocol", then we will be in there on the 24-26 of December...that would not be optimal for obvious reasons. One other thing that I have to check on is when they are planning on scheduling his muscle biopsy to check for mitochondrial disorder.

He had a fever last week, but checked out *fine* at the doctors. The fever finally broke on Friday night. He is doing better, but had a set back with his feeds as is usual with any illness. We had to back down to half his normal rate, so now we are gradually working our way back up.

Good news for our friend Izzy...she got her call...she received her new organs (stomach, small bowel, pancreas, and liver) last week, and she is doing well. Please continue to pray for her recovery as well as for the donor family that had to say good-bye to their dear one. Kyle, too, needs your ongoing prayers.

That's it for now.

Chelle

Saturday, October 16, 2004 12:48 AM CDT

Hi...just a quick update for now. Things are going pretty well and we just got wonderful news. ELIAH WAS APPROVED FOR THE CISAPRIDE (PROPULSID) STUDY THAT I TOLD YOU ABOUT A WHILE BACK!!! It has it's risks and inconveniences, but also such *hopefully* wonderful results. I think I have said it before, but it is supposedly the miracle motility drug and should help with both his esophageal and intestinal dismotility. I am so hopeful that if it works for him that we will actually make some headway with his feeding (by mouth!).

All else is going well right now. Everyone is healthy and life is just life as we know it.

Sorry that I haven't been better about updating.

Prayer requests...there are many, but just 2 that I will mention for now...Kyle (for his continued recovery and no more downfalls), and for Izzy...she is very sick right now and in need of a multi-organ transplant. Please pray that her call (for transplant) comes soon.

Chelle

Monday, September 27, 2004 9:56 PM CDT

Hi. I hope this note finds everyone doing well.

We just got back yesterday from a 3 day stay at Children's for Eliah's pamidronate infusion. We accessed his central line here at home on Thursday to make things easier for him (since in the past they have had to stick him 3 times to get a good line). After getting the needle in, we realized that it was a little too small, but we thought it would be okay. I even (regretfully) told Eliah that this was going to be an *easy* stay and one that he wouldn't have to get poked once we got there. I should know better than to promise things like that by now. Grr. When they tried to get blood (for testing) at the hospital, it didn't come easily. We knew at that point that we would have to re-do his line. He was so sad, as was I. The nurse honored Eliah's request to allow me to do it and things went well, although it was very painful since it had been "messed with" so much in such a short period of time.

He did pretty well with the medication this time. He did have some low blood pressure problems as in the past, but it didn't stay down as long as it has before. He also had a difficult time tolerating his feeds. We are not sure if this is because of the motility problems or from the meds. Since coming home he has been having some bone and muscle pain, so we have been giving him ibuprofen. Otherwise he is doing well.

Our stay was *eventful*. From past experience we knew that they didn't have certain medications that he needs, so we brought ours from home. Usually this is okay and they allow us to give them ourselves, but this time they made it clear that that wouldn't happen. We turned some of his meds (the one that needed refrigerated) in. Later, when it was time for him to receive that, I asked the nurse to bring it and they COULDN'T FIND IT!! Someone had taken the entire drawer out of the fridge and placed it on a shelf somewhere (they had been looking for it for awhile). Once they found it, we had to go down to the pharmacy to get his medications approved...after bantering back and forth, they finally approved it for use during his stay.

I can't think of anything else right now. I will write more later if I remember something that I left out.

Hugs,
Chelle

Monday, September 13, 2004 11:30 PM CDT

Hi. Our local chapter of the Oley Foundation had it's fundraiser. I haven't heard any numbers yet, but it seemed to be quite successful. For anyone that doesn't know what Oley is about...it is a national foundation helping tube/TPN fed individuals and their families to get information and support. We have been a part of the local chapter for a little over a year now (we have been with the national group for a couple of years). It's nice to be around others that deal with similar challenges on a daily basis without having to explain anything.

Eliah went in for a blood draw last week as part of the testing needed to apply for the Cisapride study (the motility med). We have the paperwork filled out and will send it tomorrow...please pray that all goes well and that he will be a good candidate for this. We are confident that this will be a beginning for him to get better.

His next infusion is scheduled for the 24th through the 27th of September. Remember to pray for his blood pressure and o2 sat levels to remain good.

Julie is doing better. The last time that I wrote, she was very ill, but is doing well now. She gained back all the weight that she lost and has even gained some beyond that. It is so fun to see one recover so *easily* from an illness...especially after Eliah's challenges. Amazingly enough, with as sick as she was...Eliah didn't get any of it...so either it wasn't contaigious or God was merciful to him and made his body strong. Either way, we will take health no matter what form it comes in.

Our chickens finally started laying their eggs. Not all of them are doing it yet, but enough so that we have about 4 eggs a day. All of the kids have gotten to collect them and I think that all are equally are excited about it.

Oh...something wonderful happened last week and this week. Scott had gotten some Pringles potato chips (that were blue) and offered them to Eliah. At first he said no...that they were ugly, but then later decided to try one. After the first, he asked for more. Scott said, "but I thought you didn't like them". Eliah said, "they are ugly, but they taste good". THIS IS THE FIRST TIME EVER THAT HE HAS SAID THAT SOMETHING TASTES GOOD!!! He has said before that things are yucky, but never that something actually tasted good. We were so excited. The next day, we had some appts for Julie and on the way home decided to stop and get a Frosty at Wendy's as a treat. Eliah said that he wanted one as well. Again...we had to scrape our chins up off of the ground. He held it and looked at it...he didn't taste it, but did at least hold it and asked for it!!! Then last night we had scrambled eggs...we put some on Julie's plate and asked Eliah if he wanted some. He said that he didn't, but later tasted hers. He ate a couple of bites. YAY!! He seems to finally be starting to *understand* the social part of eating. This is a HUGE step!

I should go for now. I will write more later.

Hugs,
Chelle

Sunday, August 29, 2004 12:04 AM CDT

Eliah's health has been pretty unchanged, which is a great thing. My update is going to most likely be short as I just tried to enter it and lost all of the info. Grrr.

Like I said, Eliah is doing pretty well. He was discharged from speech 2 weeks ago and he is testing within normal limits. Yay! This is amazing seeing as he just started speaking 16-17 months ago. A lot of progress in such a short time. He has a new aide again. The other one left on good terms, but needed a job change. The new aide is working out well...she is nice and Eliah gets along well with her. He will be starting with his new OT sometime in the near future, but I can't remember the date just now. We also went for an appt with the motility specialist this past week and were told about the good, bad, and the ugly concerning the med that we are trying to get him on. I think I told you in my last post that the med is a risky one, but the last option for him, so really our choices are limited. We were given a wad of papers to go through to review and should go in to sign them sometime in the next week. The approval process for the study for this med should be about 2 months.

Melody will begin public school for the first time in her life this week. We have mixed feelings about this that I don't have time to get into right now. Those of you that I have talked privately about it know what I mean. Those who don't, pray for God's hand in it all. He knows what needs addressed and will lead you in your prayers.

Caleb will be starting homeschool this week as well and this year we will be co-opping with the neighbors. We will be "sharing" the children and they will teach some and I will teach other classes and aspects of classes. Again, those that I have talked more to about it will understand. If you want to know more, just ask.

Julia (our healthy baby) has been sicker than a dog for 3+ weeks. She spent 2 days/1 night in the "Mooberry Hilton" (aka Children's hospital) last week because of dehydration. She is home now, but still sick (vomiting and diarrhea). They said that it is viral. She also seems to be having trouble with her stomach emptying, so the doctor is sending her for an upper GI sometime this week to see if there is a problem with malrotation or something else that would be causing this. I will update as I am able. She has lost quite a bit of weight and needs a lot of prayer.

That is it for now. I hope you are well.

Love, hugs, and prayers,
Chelle

Tuesday, August 17, 2004 4:35 PM CDT

We haven't fallen off of the face of the earth. Our computer connection hasn't been working, so I have been unable to access any of our internet related stuff.

This will just be kind of a short update as the kids are still running around being busy.

Eliah is doing pretty well. His sensory stuff has come together a little more. He still has a ways to go with that, but we have made some progress.

Our *lovely* insurance decided that they knew better than the docs about the medication that Eliah needs to be on and are refusing to pay for 2 of them. Since we can no longer get those, we are searching for others that they will cover. The one worked well (to help move his bowels), but the other one (that helps his small intestine) wasn't working much if at all. Since stopping them, he is unable to move his bowels, so we have gone to using Citrucel which helps a little but not enough, and we have not noticed any difference with his small intestine either (positive or negative) showing that the medication for that wasn't doing it's job. We have tried numerous motility drugs for him in the past and have not seen the results that we need, so the doctor is seeing if we can join the study on a med called Cisapride (sp) (this also used to be called Propulsid). This med was taken off the US market a couple of years ago because of some problems (side effects) that some suffered from it. A study opened up to try and make it a safer drug and they are looking to see if Eliah will qualify to take it. We have heard stories of how this is the "miracle motility drug". I hope he is able to get into the study.

His speech therapist is looking at possibly discharging him soon as he is making wonderful progress there. It is amazing to see the difference...he started speaking (putting some words together) one week before Julie was born. Now, just 16 months later, he is talking in complete sentences (most times). He even said a 19 word sentence the other day! We are so proud of him. He has fought so hard for every inch of ground and is making wonderful progress.

I can't think of anything else right now. I will try to write more later.

Chelle

Friday, July 23, 2004 10:51 PM CDT

Oh my gosh it's been a while and quite a lot has gone on. I'm sorry. Where do I begin??

Hummm...well, things are going well with Eliah's aide Amy. She loves him; he loves her; it's going pretty well. Because she is an aide (not an RN), she is unable to help with meds and "skilled needs", but she is able to help with daily needs such as bath, dressing, she can put new dressings on his stoma, she can assist me with accessing his port (by handing me things), and is able to supervise his play so that he doesn't break a bone. This all is a huge help. She also helps to play referee between Eliah and Julia when they get into it over a toy or space.

I have mentioned numerous times about the feeding issues and what we were doing to address it in OT...I spoke with the OT 2 weeks ago and told her that I felt that her approach wasn't working (where she was really pressing the issue and making food a battle ground). I feel that it is building behavior problems where there weren't ones to begin with. I feel that in observing Eliah and knowing all that he has gone through, that his life, for him, feels very out of control...that things are happening to his body (medically) that he has absolutely no say so over (ie procedures being done, medications being given that make him feel sick, devices being placed in his body, treatments...etc) and that food was the one area that he had a little bit of control over...at least up until we took that away a few weeks ago. I told her that we wanted to back off of the food "issue" for a while...to allow him to have one area of control back, and then gradually as things begin to feel a little more settled for him and as he gets to a point that he can understand a little bit more, that we would then begin a new, more encouraging approach, rather than a forced approach, to get him to accept food by mouth. We still plan on offering food at every meal and having him sit with us, but not making a big deal of it. The OT agreed that we had kind of come to a stagnant place and that she was pleased with how long we "stuck it out" with her plan, and that it was fine if we wanted to try a different approach. We also talked discharging him from OT so that we could do this on our own and so that we could attend the feeding clinic in Dublin. She agreed and discharged us on the 8th of July.

Already we have noticed a little change, where he will ask for something if he sees that someone else has it. He also seems a little bit less terrorized by food.

When we went to the feeding clinic evaluation they noted that Eliah's sensory system was pretty overloaded. I think largely due to the feeding issues mentioned above and just feeling basically out of control. They also said that medically he wasn't ready to begin a feeding clinic until his medical (esophageal dismotility and mild neuropathy...ie how the esophagus and intestines squeeze things through) issues were addressed in order to have any success with feeding therapy. They also said that when he was ready for the feeding clinic, that we would need to do an in-patient one b/c of his medical issues. They mentioned the one at Children's hospital (the one that I have mentioned before and said that we very strongly disagree with the fundamentals of the program). I told them that the only way that we would do their program was that if they were to modify it and make specific changes...in regard to parental involvement. They said that they would do what was necessary to make it work.

Their recommendations were to begin his brushing and joint compression therapy (Wilbarger Protocol) again every 2 hours to try and help organize his sensory system, to start back up with an OT (this time one at Children's Hospital) 2-4 times a month, and to address his medical issues with the GI. I am hoping that as he gains a little control over feeding and as his sensory stuff becomes more "focused" that his behavior issues will improve as will his oral and tactile defensiveness. The first night that we started brushing and joint compression again he started gagging and retching and crying that it hurt. Already we see a slight improvement as he isn't gagging and retching with it, but he still doesn't like it and complains of it hurting.

Next item up for bid...his port. A nurse came today to train me/us on how to heprinize (sp) his central line (to keep it from clotting). This has to be done once a month in between infusions. All went very well with this and the nurse felt that I did a good job with it. I asked her if we would be able to access him here at home (ahead of time) when he has a procedure at the hospital to minimize his trauma and she said that she didn't see why we couldn't. He does so much better for me, and if there is anything that we can possibly do to make his hospital stays any easier, then we definately want to do it.

I think that's it for now. I feel like I'm forgetting something. I will just add it later if I remember.

Hugs,
Chelle

Wednesday, July 7, 2004 10:50 PM CDT

This past week has been a pretty good one. Eliah's new aide (Amy) started last week, so we are all getting to know one another. Eliah really likes her and says daily "I want to keep her". The poor girl has been running all over the place with us to various appts. It will be nice when we get back into our school schedule so that hopefully things will settle some and get into some sort of routine. Today we had our follow up GI appt with Dr. M. Our last "chat" didn't go so well as (if you will remember) she accused that his feeding issues were "parental in nature"...this of course before she finished testing. Since then he had an esophagram which showed dismotility in the distal (sp) area of his esophagus. What this means is that the esophagus isn't squeezing things through properly...the lower part of his esophagus isn't squeezing hard enough, therefore not pushing things through well causing the gagging and retching. Boy, validation feels good! I asked if they would be addressing this medically, and she said that they would, but not yet. She has also talked more about the feeding clinic...the one at Columbus Children's...this is the one that we DO NOT want him to go to as it is very behaviorally based and what in our opinion is abusive. We have heard of another feeding clinic in VA that is called Kluge...we heard of this through a friend of ours in our g-tube group that went there and had a huge success. The focus of this particular clinic is to keep food fun and excting, making it a positive experience. Our friend has since gotten the feeding tube removed because he can now eat 100% of his feeds by mouth! We want that kind of success.

Tomorrow we have SLP/OT/PT. I will be talking to his OT about discontinuing services with her as we will be transferring his feeding issues to another clinic. We will still continue with SLP/PT there though. I hope this talk goes well.

We had a pleasant suprise this week...Eliah's former teacher from EI stopped by for a quick visit. She was thrilled with the progress that he has made since she left a little over a year ago.

I should go for now. Please remember our friends that are in need of prayer. Kyle is still in the hospital with numerous difficult life adjustments. We also found out tonight that another young friend of ours has passed away.

Hugs,
Chelle

Monday, June 28, 2004 9:26 PM CDT

This past weekend was Eliah's second infusion. Nannie and Aunt Kelly stayed during the day on Friday and Saturday to allow Scott, Melody, and I to attend the CHEO (homeschool) convention. I don't even need to go into just how spoiled he was during their time with him. Caleb and Julia stayed with Grandma Char and Papaw and had a good time there.

Eliah's hospital stay started out with finding out that we were on the 6th floor (knew we would be), but on the opposite side of the hallway. Instantly I panicked because that has always been (at least to our knowledge) the infectious disease ward. With Eliah's not so strong immune system, I wasn't real thrilled with this. I asked the floor nurses as well as his infusion nurses about the risk to his health there and they both said that he should be fine as they keep the kids with airborne stuff in negative airflow rooms. Whew! Our room, this time, was the largest and nicest room that we have ever stayed in at Children's. It almost felt like a hotel room (with the exception of the nurses coming in every 30 minutes to do vitals). lol We even had our own shower in the room.

Eliah's port was supposed to make things easier for the whole IV thing...not so. He still had to get stuck 3 times as they couldn't get the port to flush. The poor little guy. I felt so bad for him. He had some really great nurses though. They were so sweet to him.

He has been limping and complaining of pain in his right leg for the past couple of weeks. We weren't sure if it was muscle or bone related, so I asked them upon admission if they would x-ray it to be sure. They did an x-ray and as we were reading the results, I noticed that they x-rayed the wrong leg! Grrr. After I pointed that out, they took him back down and re-did it...on the right leg this time.

He also got to spend some time with our dear friend Kyle who is still in the hospital. Please continue to pray for Kyle...he is facing surgery later this week where they will have to amputate part of his left leg as well as some parts of fingers and toes. This would be a lot for anyone to deal with, but seeing as he is only 5 years old, you can understand how much more of an impact this will have on his young life. Please pray that he accepts his prosthetic leg and is able to learn to use it as quickly as possible.

I think that is about it for now. Oh...I don't remember if I said it or not before, but we (after fighting for 3 years for it) have received the Ohio Home Care Waiver. This waives our income to allow Eliah to receive medical benefits through the Medicaid system. With this we can receive help (nurse and/or home health aide) 6 hours a day, 7 days a week. This will be especially nice when we start our homeschooling back up again in the fall because there will be someone to supervise Eliah's play to make sure that he stays safe (b/c of his bone issues) and to help with some of his therapies, while I school the older ones.

Okay...now I'm really going to go.

Chelle

Tuesday, June 22, 2004 9:35 PM CDT

Last week Caleb was gone and Eliah missed him to pieces. With the way that those two fight, you would think that they would have both enjoyed the lack of competition, but all Eliah did was ask when Caleb would be home and say that he wanted him back. Finally on the day that we were going to pick Caleb up (Monday) Eliah layed on the floor and cried for him...he just couldn't wait any longer. They are glad to be back together and (like typical siblings) are already back to fighting. lol

Caleb had a great time in Canada. He did some white water rafting, climbing, archery, horseback riding (into the Canadian Rockies and even spent the night there). He made a lot of new friends. Today he was missing one of the counselors that he had gotten close with, but was also glad to be back home.

This week is busy planning for Eliah's hospital stay (this weekend) and the homeschool convention (where we will go to get the kids books). Aunt Kelly and Nannie will tag team staying with Eliah while we are away at the convention. Please pray that all goes well with the infusion and that he doesn't suffer too many ill effects from the meds. I was told the last time around that this time would probably be a little worse than the last time, but *hopefully* after this one, the other ones shouldn't make him too sick.

While we are in the hospital this time, we will go and visit with our friend Kyle (in between treatments) that we have been praying for. He is still very sick and will be in the hospital for the majority of the summer. Please continue to pray for him.

Hugs,
Chelle

Tuesday, June 15, 2004 12:03 AM CDT

Hello. Gosh...it has been a while again. I'm sorry. Eliah's port is healing up well. He complained a little about it today (that it was hurting), but I think he might have bumped it. The scars are scars...what else can I say?? But all in all, it really isn't that bad. I try to think of all the scars as "character marks"...boy does this kid have a lot of character!

We FINALLY received the Ohio Home Care Waiver!! We have been fighting this fight for 3 years and have finally won. While his needs are still pretty consuming, they seem so much less than what they used to be, but we will be glad to have whatever help we can get. With this he will have the Medicaid card to help with formulas, meds, hospital, everything! This should also provide for some nursing help (maybe during our homeschool time) which would be WONDERFUL!

Eliah's next hospitalization is on the 25-27th of this month for his infusion. Melody, Scott, and I will have to be at the homeschool convention for a good part of this hospitalization, so Nannie and Aunt Kelly will be staying with Eliah to make sure that all goes well and that he isn't alone. I hate the thought of being away from him, but I need to do this for the other kids and I know that he will be well cared for.

Melody (and Kayla her friend) just returned from 3 weeks of visitig with Kayla's grandparents in Michigan. She had a good time and missed us I think as much as we missed her. The day after she got home, we had to take Caleb to the airport for his trip to Canada. He will be gone for 10 days! Yikes. I don't know if I have shared about this camp before or not, but it is a camp given by the Tim Horton's Children's Foundation for underpriviledged kids. We would not normally meet the financial criteria for this, but because of Eliah's medical expenses and high level of need, we qualify. A friend of ours that owns 3 Tim Horton's restaurants recommended Melody for this opportunity 2 years ago (she went to the Kentucky camp) and Caleb this year. They fly the children there on a commercial jet, then take them on a bus ride into the camp, provide all of their meals, give them a sleeping bag, duffle bag, t-shirt, and cup to keep. Their goal being to give the children as many experiences as possible in this one camping experience. Caleb is supposed to be staying one night in the Canadian Rockies (after they hike there), horseback riding, white water rafting, archery, swimming, etc. The cabins that they stay in are VERY nice with air conditioning, indoor plumbing, nice bunk beds...nothing like the camps that we stayed at as kids. lol

Please continue to pray for our friend Kyle and his parents, sister, and extended family as he is still very ill and trying to recover. He will remain in the hospital the majority of the summer.

Hugs,
Chelle

Sunday, June 6, 2004 11:42 PM CDT

Eliah's central line/port placement (on Friday) went well. The surgery was scheduled for 2:30pm, but didn't actually take place until around 3:20pm. We were back home by 8:00pm that night.

He was given pain meds to get through the initial healing period. He only had to have them twice today, and it seems as though he won't need them tomorrow. All in all, this surgery (in comparison to all the others) was relatively simple in terms of the healing.

We will have to watch his temps closely to be sure to catch any signs of infection. Because of his low base temperature (his norms are btw 92-95 deg), we are unsure of what they will consider a fever. Tonight is temp was 93.3, so we are good to go for now.

Still no word on the results of the esophagram. I will have to call and bug the GI office again tomorrow and keep on them until we hear.

We did hear though about our BCMH...we have been approved again this year!! Yay! I talked to our casemanager about the waiver, and she said that it is still in the state's hands and that there has been no decision made yet. Grrr. Please continue to pray that this could happen.

Please continue to pray for our friend Kyle. His recovery is going to be very long and difficult. He is doing better than he was, but is still so incredibly sick.

Love,
Chelle

Wednesday, June 2, 2004 11:21 PM CDT

Things have been going pretty well with Eliah this week.
We heard that the test (esophagram)that he had done a week ago didn't have the best results, but our doctor is out of town, so we have to wait for the complete results.

Eliah will have his port placement this Friday...we don't know what time yet...I will try and post it when I know the time. Please pray that all goes well for this procedure.

I have been trying to get in touch with several folks about our funding...we are trying to get our BCMH (Bureau for Children with Medical Handicaps)renewed. Please pray that we will meet the criteria to be able to receive this help. We are also trying to get the Ohio Home Care Waiver for Eliah...this would help pay for his therapies, medications, enteral feeds, hospitalizations...everything. We also would have the potential of getting some nursing help. We have been denied for this numerous times, but will be like the persistent widow and appeal until the cows come home!

Also, we have a dear friend (Kyle) that has been very ill and is in the hospital recovering (a very long and difficult recovery). Please pray God's mercy to heal him and for God's speed in his recovery.

Thank you for all of your prayers and love. You have been God's arms to help carry us through so much!

Hugs,
Chelle

Sunday, May 23, 2004 10:39 PM CDT

Eliah turned 4 today! I can't believe that it really has been that many years. Happy birthday to our sweet little guy! We had his friend Josiah (and his mommy Teri) in to celebrate with us. The boys had a grand time throwing confetti (decorative present packing) around the room and yelling, "SURPRISE". It was so funny. They had so much fun with that in fact, that they sort of forgot about the presents. Ahh to be 4 again. *grins* Both of these boys have had so many challenges to overcome and both have made it SO far! It was a small but hugely joyous birthday. Later tonight Eliah, Julia, and I sat and played the games (Memory and Ants in the Pants).

I made a birthday cake for him shaped like a train...complete with an engine, coal car, cargo car, and caboose. He didn't eat any of it, but really liked that it was a train and that it was his.

Melody is in Michigan this week (actually for 3 weeks). Eliah was really bummed that she wasn't here for his birthday. He loves his big sister. Caleb was here though to celebrate with him.

That's it for now. I need to get to bed. Eliah has another test at the hospital tomorrow...an esophogram. I think I spelled that right. Anyway...I will post again in a few days.

I don't know if I posted this before or not, but he will be getting a central line/port for his infusions on the 4th of June. This will be done outpatient. Later in the month (25, 26, 27th June) he will get his next infusion. We were going to do it outpatient, but since he will have a new port, they want to do it in house to be sure that all will go well with it. As long as there aren't any problems on this round, the next one will be done in the outpatient infusion clinic.

Hugs,
Chelle

Saturday, May 15, 2004 11:18 PM CDT

Gosh...I didn't realize how long it had been since I updated. I'm really sorry. Things have been busy here...Melody is planning on going to Michigan with a friend...Caleb is going to Canada for camp...the chickens are growing, the bunnies are still alive and getting stronger, we almost had two baby robins to care for but managed to ditch that responsibility and pawn it onto someone else. Julia is a busy-body who eats all the time, is learning to talk in sign language and with her voice, and Eliah has had a lot going on as usual.

The motility specialist's/GI nurse said that the doc had reviewed the swallow study and said that structurally things look good and that she had a plan for us to follow to see how things would go. She said that we were to cut out all g-tube feeds for the next 2 weeks, do weekly weight checks (and phone them in), and keep daily food logs to be faxed once a week.

After I picked my chin up off the floor, I came back with the comment, "Does she realize that he is 100% g-tube fed?? And that he doesn't have any idea what *hungry* is?" I was flabbergasted that they would even suggest this. I also told the GI nurse that I wouldn't do it. She asked if I would feel comfortable with doing it for 24 hours as a trial run? I said that I would and immediately called the ped to get her take on it.

Basically she said that she would only feel comfortable with doing that for 24 hours, but that we should replace his feeds with water to maintain hydration. I informed her that the GI didn't say anything about that, but that I felt better about at least doing fluids. Dehydration is a pretty big deal!

Anyway...he was crying by the next morning and saying that his tummy hurt. I told him that it hurt because it was hungry and that if he ate something, that it would make the hungry pains stop. He cried and said that he didn't want to eat. This was totally understandable to me, as food has never been something that made him feel better...it always (in the past) made him very ill...and now I was trying to convince him that eating would somehow make him feel better. He didn't buy into it very well. That day he only ate 1/12th of a cracker and a little water. He normally takes water PO and will occasionally bite a cracker, so we didn't feel that this was major improvement. I called the GI office again and told them how it went. Later the GI doc called me and said that the nurse had told me wrong...that I was only to cut the daytime feeds, but that I was supposed to maintain the nighttime ones. She also went on to tell me that she wanted me to cut all day feeds (tube) for 3 days and to only offer food at mealtimes...that he couldn't have anything to eat or drink in between meals and such...not even water. We did this for 3 days and it didn't change his eating at all. He was just miserable and had little energy. I told the GI that I didn't think the timing of this was good...that he wasn't ready. The GI basically told me that his eating problems were parental...meaning that we were discouraging him from wanting to eat by continuing his tube feeds. I put the breaks on the tube feeds deprivation and called the ped and consulted with the OT and told them what the GI said and asked what they thought. They both supported what Scott and I are doing for Eliah and said that it was not a parental issue...that Eliah's oral aversion is so strong because of his medical issues (past and present) that he just wasn't ready for this yet (developmentally).

Obviously we are glad to have the support of other medical professionals (that have actually spent time with Eliah and with us) and not just the specialists that have only seen him on occasion and make rash judgements about our character/parenting.

Other than that, Eliah is *just about* to the place where he was (physically) before his broken bones last fall. It has taken us a long 7 months to get to where we are now, but we are thrilled with his progress.

I think that's it for now. I'm sorry that I still haven't posted pictures of the chickens yet...we will try to do that soon.

Hugs for now,
Chelle

Wednesday, May 5, 2004 11:14 PM CDT

Today Eliah had a VSS (video swallow study) done to check for aspiration risks. He only had one little "blip" during the test, but it self corrected, so they said that it is not an issue. This was good news. The "blip" made me wonder if it might be an issue sometime in the future, but I decided that since they (drs) are comfortable with it, I wouldn't worry about it unless it becomes a problem.

A MAJOR MILESTONE ACCOMPLISHED TODAY!!! Eliah got in the garden, touched dirt (hands were filthy), and PICKED UP WORMS!!! This all from the boy that used to throw up if we would touch him, and would "lose his head" if he ever had to touch anything fluffy, feathery, slimy, grainy...you name it he wouldn't touch it. If you will remember, he used to keep his hands closed all the time because the stimulation of something touching his fingers and palms was just too much for his sensory system to handle...but now...IT IS AMAZING!!

New *pets* in the house...we got chickens. Eliah named his "Lellow Lucy". As I mentioned above...feathers used to send him over the edge, but now he asks to touch and hold the birds. Our family thinks we are nuts for having chickens, but there are already so many positive things coming from this experience. I will try to post pictures soon of the children with their birds.

We have two temporary additions (pets)...bunnies. Our neighbor accidently ran over a nest in her backyard while mowing. She brought the surviving bunnies to us. She was so upset and asked if we would take them. We are nursing them with 1cc syringes and plan to only have them until they are able to be on their own...at which point we will *free* them out in the country. I explained to the kids that wild bunnies are just that...wild, and that keeping them just wouldn't be right. They understand, but are enjoying them for the time being.

Chelle

Wednesday, April 28, 2004 10:37 PM CDT

I don't have a whole lot to post tonight, but wanted to give a little update to let you know how the little guy is doing. His eating has been very poor (since his bologna day) up until today...not that he ate a lot, but that he ate something. Tonight he tried 1 small piece of bologna, 2 small bites of cottage cheese, and 1 tiny piece of peach...ALL WITHOUT GAGGING.

Mobility wise he has had a rough week. He started struggling on Sunday with falling a lot, and has been that way since. We don't know of any apparent reason. I plan on telling the PT tomorrow about it to see what she says. There are good days and there are bad days. Then this morning he fell down the steps. *All* he got was scared and bumped a little...Caleb was at the bottom and was able to soften his fall.

I talked with the infusion nurse today about how we are going to do his next infusion. We are going to do it on an outpatient basis through the infusion clinic, but the unknown part is whether he will get a port put in or a regular IV. The problem with the regular IV is that he is a very difficult stick...I can't remember if I posted about it or not, but they usually have to dig and dig for a vein and then end up giving up just to try again later. I don't want him to have to go through this every time and even though a port is a bit more complicated, it would give easy access for blood draws and infusion treatments. The nephrologist is going to consult with the ped about it and will let me know what their decision is. I will let you know when I find out. His next infusion is going to be in June.

I think that is it for now.

Chelle

Sunday, April 18, 2004 10:20 PM CDT

We did take the bologna to OT on Thursday and Eliah ate about 3/4 of a piece (over the course of 2 hours). We were so excited. He also tried two small (tiny) bites of bacon. So exciting!!

This week has been a pretty good one. (knocking on wood) We are in the process of getting our garden prepared and planted with various veggies and fruits for the year, so on Friday the big kids and I worked outside (and the little kids played) from 11am to 8pm! We are all a little pink. Julia's birthday party was on Saturday and the weather was wonderful for it, so we had most of it outside too. OH!! I almost forgot to say something about it here...ELIAH TOUCHED SAND!!! He saw Julia sitting in the sand...with her bare feet buried in it, so of course he wanted to do it too. I about fell over. Last year he would only touch it with a "tool" and the year before he would only scream at it. He has come such a long way!

Then today he went for an airplane ride with Daddy. He was so excited about it and kept bugging us about it all day. It was so cute. "Mama, I want to fly" I said, "You will fly...in a little bit". him:"I want to fly now" me:"We have to go to the airport first" him:"I want to fly right now".

You get the picture. And speaking of pictures...go click on the photo page and you can see part of his day.

That's it for now.

Hugs,
Chelle

Sunday, April 18, 2004 10:20 PM CDT

We did take the bologna to OT on Thursday and Eliah ate about 3/4 of a piece (over the course of 2 hours). We were so excited. He also tried two small (tiny) bites of bacon. So exciting!!

This week has been a pretty good one. (knocking on wood) We are in the process of getting our garden prepared and planted with various veggies and fruits for the year, so the big kids and I worked outside (and the little kids played) from 11am to 8pm! We are all a little pink. Julia's birthday party was on Saturday and the weather was wonderful for it, so we had most of it outside too. OH!! I almost forgot to say something about it here...ELIAH TOUCHED SAND!!! He saw Julia sitting in the sand...with her bare feet buried in it, so of course he wanted to do it too. I about fell over. Last year he would only touch it with a "tool" and the year before he would only scream at it. He has come such a long way!

Then today he went for an airplane ride with Daddy. He was so excited about it and kept bugging us about it all day. It was so cute. "Mama, I want to fly" I said, "You will fly...in a little bit". him:"I want to fly now" me:"We have to go to the airport first" him:"I want to fly right now".

You get the picture. And speaking of pictures...go click on the photo page and you can see part of his day.

That's it for now.

Hugs,
Chelle

Wednesday, April 14, 2004 11:05 PM CDT

ELIAH ATE BOLOGNA TONIGHT!!! It might seem silly to some to be so excited about bologna, but not if you know about his oral aversion. I opened the fridge tonight to look for something and he said, "I want that" and pointed to the plate with cut pieces of bologna (the big kids ate it for lunch). I said "ok", doubting to myself the whole time that this would go very far, and offered it to him. He took a piece of it and ATE IT!! Then he asked for more. I never in a million years thought he would eat that. I have offered it before and it wasn't happening, but tonight it did. He managed to eat about 5-6 bites before gagging, but he did it. I was so proud of him. We will be walking tall into OT tomorrow sportin' our plate of bologna to *hopefully* do again with his therapist.

We had a nice Easter with family. Eliah collected his eggs and got a bag of candy. Inside the bag were some of the candy "dots"...he ate a couple of these as well. Normally he hates sugar/sweet things, but he seemed okay with these.

Caleb turned 10 last Saturday (on the 10th) and Julia will be 1 year old tomorrow (the 15th)...it seems so strange that a year could have possibly passed already! I will close for now and write more later. For now things are going pretty well. I sure treasure when things are going well.

Chelle

Friday, April 2, 2004 10:53 PM CST

I started to update a couple of days ago (after coming home from the hospital), but felt too overwhelmed with everything to finish.

Eliah had his first IV pamidronate infusion last weekend (the 26-28th of March). As usual they had a hard time getting an IV going on him...they infiltrated his vein on the first attempt, and then went (per my request) to get someone else that was a better stick, and got it that time. We were told that the IV's usually give out around day 2 with this med. so to expect another IV stick, but thankfully it held the whole time! Yay!! We expected for him to feel very sick and have many side effects, after hearing about others that have gone through it. Thankfully it wasn't nearly as bad as I'd imagined! He did have some side effects...a high fever, fatigue, and low blood pressure (76/37 on two of the days), but once he started moving about the bp came back up. The infusion was 4 hours each day. During the rest of the time he wasn't hooked up to the IV fluids, so he could run about and play. That was nice too. He got to really liking the patient playroom and we even got to go to the rooftop playground on one of the days when it was really warm. The nursing staff was wonderful. We had a shared room this time. Every other time that Eliah has been in hospital, he has had a single room. Our roommate was a 19 month old boy and his parents. They were very young and sweet and were only there part way through Saturday, so the rest of the time we had the room to ourselves. Melody and Caleb spent time with Daddy some and with Nannie part of the time, so they had fun, and Julia spent days with Nannie and nights with Daddy. This was the first time that she and I were away from eachother. We both survived it (barely), but she doesn't like it when I leave the room now. lol. It was good for me (and for Eliah) that we had that one-on-one time again...we used to always "do" hospital time together alone (before Julia) and he really needed it again. I think I did too. We worked on his feeding issues really intensly at each meal and have determined that it wasn't so beneficial. (It took 45 minutes for him to eat 9 kernels of corn. We were both exhausted from that.) After talking to his OT, she has said for us to keep food fun and enjoyable and to let her "press the issue" with him, so that it doesn't become a battleground. I was so glad to hear her say that, as this was how I had been feeling about it too. She did say that it was good that we attempted it though. He is going to be starting a new feeding clinic in Dublin soon, so hopefully that will make a difference too. We'll see. I will be sure to update about that.

He is still having motility issues. He had an esophageal and gastric emptying study done this week too. We haven't gotten results back for that yet. I really wish that they would find better ways to do these tests...they had us bring in an egg to mix the barium with (so that they could scramble it and have him eat it). He gagged and retched his way through some really tiny bites. I was so proud of him though, that he tried. It's late and I'm tired, so if I forgot anything, I will add an update later. Thank you for your prayers and love for Eliah and all of us. Please remember to lift up some of our dear friends...we have two friends that have recently lost their dear children...the little ones that are now with Jesus are Gloria and Nicholas (two different families)...please pray that God would wrap Himself around their families and help them to figure out how to go on. We also have many friends that are very ill...some needing transplants, and others with chemo treatments.

Hugs,
Chelle

Sunday, March 21, 2004 11:24 PM CST

Hi. Eliah has been doing pretty well lately. We went back to the motility specialist last week and talked about how the meds were/weren't making a difference. She increased his Zelnorm dosage, changed his bolus feeding schedule...he is still getting 4 boluses, but each one is now given over a half hour rather than an hour. The amount that she wanted to increase his bolus rate about made my eyeballs fall out...she told us to take him from 120cc to 200cc per hour. Usually increases with him have to be done VERY slowly, but we tried and he handled it well (so far)...soooo...that makes me think that the Zelnorm is working. If it wasn't, I would think he would be gagging and retching a lot more. After a week of doing this, we will try dropping the last bolus and see if he will eat. He still is unable to tolerate more than 5 tiny bites of food, but we are hoping that this (the bolus schedule) will *train* his stomach to be hungry...something he is completely unfamiliar with.

We went to the hospital this past Saturday for our Oley mtg. (for tube fed folks and their families) and for the first time in what seems like forever, he didn't wear his mask. I am hoping and praying that we will not live to regret this. I was really anxious about it, but he was thrilled.

Well...this is the week that we have been both looking forward to (because of the *positive* effects of stronger bones) and dreading, at the same time, because of the IV and it's negative effects. The first thing that needs LOTS of prayer is simply the difficulty of getting an IV on the little guy...he is a miserable stick and even the special team that they have for this purpose struggles with his thready-rolly-poly veins. We are praying that they will take our cautions seriously and just get someone from transportation (Med-flight) to do the IV. He has been anxious about this and says daily "I don't like IV's". The other thing that needs lifted up is that he doesn't get too sick from the meds.

On another front (sort of)...this will be Julia's first time away from me (at night)...she is going to stay at home with daddy and doing bottles when she wakes up. It will be hard on both of us, but Eliah will really need the undivided attn. and she is getting old enough to begin learning to separate (eeek). I really hate that we have to do this, but this is our life and I know that God has made her strong for the task...just as He has her dear brother.

I still haven't heard back about the results of the blood tests (done by the nephrologist) but plan on calling tomorrow to see if they have any clear answers.

Something else that the motility specialist did was to change the dosage of his Miralax...the way she wanted us to mix it would have rendered it unstable, so after doing a LOT of calculations, I figured out (with English measures) how much to give him. Medical-moms really should get honorary degrees. LOL. The change has made a tremendous difference...he has daily bm's and doesn't struggle the way he did. She (Dr. M) told us about a new feeding clinic that they are setting up, that she thinks he would be a good candidate for. It sounds like they have really thought this one out and that it will be a good thing. We have to schedule this yet.

I started having MAJOR back spasms this morning because of coughing (from asthma problems), and really need these to go away before Monday morning (which will start for us in 6 hours).

One last thing and then I will go...we have many friends with very sick kids...one of them (~3 yr old) aspirated feeds last Tuesday, went into cardiac arrest, was down for 20 minutes, and is in the hospital on a vent. Medically things look very grim, but the mother as well as other believers are praying and believing for her healing. Please pray in agreement with us for this.

Hugs,
Chelle

Thursday, March 11, 2004 1:12 PM CST

I have been slow in updating because I wanted to give as much info as possible and was waiting on some dr visits and appts to do so.

A lot has happened since I last wrote. His walking has improved TREMENDOUSLY! He is walking without the walker now and has been for about a week and a half. He still has a limp and his foot turns out, but we see improvement almost daily.

He is getting back into the *groove* at PT and doing things like he used to before the break. He is walking up and down the stairs again and working on the "wobble board" to improve his balance. He is also getting to stand on the platform swing to learn to shift more of his weight onto the weaker leg. After his therapy sessions he is usually pretty wiped out from working so hard.

We still don't know what to think of the intestinal stuff. The Zelnorm that he is on helps some with the gagginess, but not as much as we would like it to. There are some nights where we are unable to complete a feed because he is too gaggy. Last month when I thought that this same med was helping with BM's...I was wrong. The next day he had pebbles in his diaper again. The motility doc has put him on Miralax to help with this and it has really made a difference. But boy the odor! Scary thing. We are scheduled to have an esophageal emptying scan done on the 30th of March to see if he also has motility problems in his esophagus that could be effecting his tolerance of PO (oral) feeds. The most he is able to take is 5 small bites (on a good day) before gagging and retching.

We finally had our appt with the nephrologist (kidney specialist) to see if Eliah qualified for a treatment that they are doing to improve bone strength/density. He does, and will begin his first treatment on the 26th of March. This will involve a 3 day 2 night stay at the "Mooberry Hilton" (aka Children's hospital) where he will get an IV infusion of pamidronate. This has been shown to increase bone mass and decrease fracture rates of patients with osteopenic bone disorders (ie. osteogenesis imperfecta (OI), osteoperosis). This treatment will have to be done every 3-4 months to begin with, but as his bone strength improves, it is likely that he will be able to have more time between treatments. We have been told that with this first treatment he is likely to experience a lot of discomfort...bone pain and muscle aches, high fever, and other flu like symptoms. They will be monitoring him very closely during the treatment (taking vital signs every 15 minutes) during this stay. Yikes! I have some concerns as to the long term effects of this...I worry about what they don't know...but then I think, "Do I want him to live like a bird in a cage for the rest of his life, or do I want him to be able to live as full of a life as possible for as long as he can?" I really don't like either of those options a whole lot...I would much rather he just be healthy, but given the two options that I have, I have to choose that he could get as much out of life as is humanly possible for as long as he can. God knows how many days he has been given...I just want those days to be as full and as *normal* as they can be. I want him to play and just be a kid and not have to worry about being careful and breaking a bone.

He had his blood drawn on Tuesday after meeting with the doc and I believe from this they will be able to tell which one of the disorders he has...therefore giving us a *name* to research the LIFE out of.

As far as CareStar and the whole nursing circus...I don't know what is going to happen with this. The CareStar lady came here the other day to collect info and "see the need" and from what she said, it sounds like we may get some services, but not the ones we need. I am so tired of trying to get help with his stuff. I just prayed after she left and then again several times during the night last night that God would provide for us in the way we need it most. He knows the situation and knows our needs better than we do ourselves. I will let you know what the determination is when we learn of it.

I really didn't mean for this to get so long winded. I hope this note finds you all doing well. We appreciate your prayers and love so much! Thank you for standing with us. You are wonderful!!

Hugs,
Chelle

Tuesday, February 24, 2004 10:31 PM CST

Here I am being slow about updating. I'm sorry again.

We went to the ortho last week...they did x-rays of his leg and said that things are healing so well that we don't need to come back (for that) unless he has additional problems. Yay!

We also had him look at the left forearm again because we noticed a "lump" that we thought might be a displaced bone...he did an x-ray on that too and said that the lump that we are feeling is where the bone is growing together and growing "up" instead of straight. This (bone fusing) is also causing more limitations with his ROM (range of motion). His ROM is approx. 0-10 degrees now. He said the only thing that can be done for this is to operate and cut away at the extra bone growth, but that it would grow back within about 6 months. He didn't see the need to put him through this just to have the same difficulties in the future. If both arms were effected, then he would do something more about it, but since it is only one, we will leave it alone for now.

He is walking much better now and only using the walker occasionally. He had gone for several days without it and kind of "over did things" and needed to use it again. Today he used it about 50% of the time. The PT is concerned about how he is walking (when w/o the walker) because he favors his leg and leans over...she doesn't want scoliosis to result from this and said that the walker will help him to walk properly but also doesn't want him to be too dependant on it. It's a delicate balance.

I'm not sure what to think about his intestinal stuff...I *think* that things might be getting a little better with the meds that the doctor is using. I had my doubts (since leaving the hospital) up until yesterday, but I'm thinking that maybe things are getting better. His bowels are moving better...almost too easily right now...he went from constipation to very loose stools. I am hoping this will balance out.

We applied for the Medicaid Homecare Waiver last week (the one that will hopefully get nursing help for him). We had a face to face interview with the county and now have to wait to talk with the Carestar people (for a home visit and assessment). Please, please pray that this can happen this time around. It would be such a tremendous help. It is kind of like a "welcome intrusion"...having a stranger in the house so much of the time, but also being free to "just be mom". Plus...as long as a good match is made (nurse to family) they kind of become like part of the family because of spending so much time with us.

The other kids are doing well. Melody has become a book worm and is ALWAYS reading. This really is a wonderful thing. Caleb is working hard with mom to brush up on some of his "rusty" school stuff. Eliah is busy with being cute and going to all of the therapies. Julia is walking all over the place and getting quicker by the day. She loves to take things from other people and "run" away with it. She has the biggest ornery grin on her face when doing this too.

Scott has his private pilots license now and is flying quite a lot. Both of the big kids have gone flying with daddy and enjoy it.

And I am just doing my thing and directing this three ring circus. =o)

Hugs,
Chelle

Monday, February 16, 2004 9:39 PM CST

I want to apologize for not updating sooner. My inconsistancies must drive some of you crazy. Things have been pretty intense with appts (therapy, doctors, etc every day) for a while that I was just "digging in with my heels" here at home...taking care of lose ends while also thinking about updating this page, but it didn't get past the thinking stage...until now.

Last week Eliah was admitted for motility testing at Children's. I wasn't sure, at first, if they would take him as he had a cold at the time, but because he didn't have a fever, they let him stay. We got up to his room around 9:30am and waited for his bed to be brought in. They took his vitals and gave him hospital jammies. Shortly after this they came in to get his IV going and couldn't find a good vein. He is such a miserably difficult "stick". His veins are tiny, thready, and they roll. The hospital now has a special team that does IV's and even they couldn't get it. A little while later they brought someone else in (can't remember her title) and after some work, she was able to get it in. Ahh. They came once and started to take him down to begin putting the catheter in that would hold the various probes (these measure the pressures and muscle contractions in his stomach and intestines), but had to put us back in the room because they had a trauma case come in. After waiting for a couple of hours they came back to get us for the catheter placement. When we first went down, the doc started explaining that they were going to sedate him so that they could put an NG (nasogastric tube - up his nose and down his throat) in that would go to his stomach. I immediately lost my cool with them and started questioning why they would do that when they had access to his stomach via his g-tube. This happened 3 different times...each of which I made a fuss about and they realized that they had the wrong orders! Anyway the placement went well and they later took us back to the room. Later this same night, they began "go lightly" on him (basically human Drano) to clean him out for the testing that would happen on Tuesday. I complained again that the orders that the doc had given us said nothing about that. They insisted that they had to follow the orders that they had. About 10-20 minutes later they were contacted by the doctor and she said that he was NOT to have that, so they stopped it. Once again they had the wrong orders. Grrr.

The only other thing that happened on the first day there was regarding our "stay" at the Ronald McDonald House...my mom and Julia were supposed to stay there because of Julia's need to nurse frequently. We had talked with the staff there and they said it would be no problem, but then when it came down to the wire, RMH wouldn't let them stay "because we lived within Franklin County" and it was against their policy to allow folks to stay if they weren't from outside of Franklin Cty. When we were in admitting, they specifically said that Julia wouldn't be allowed to stay on the unit so we were in a pickle. I called a friend that knew a friend at Children's and as it ends up, Julia and my mom stayed in the room with us. We kept saying that it isn't what you know, it's who you know.

The rest of that day was pretty good and fairly quiet. The next day (Tuesday) they did an x-ray to make sure that the probe placement was still correct, and it was, so then we went for a whole day of testing in GI procedures. It was long and he had to lay pretty still. Of course he tried to fidget and fight as much as he could at first, but then gave in to watching "Finding Nemo" over and over again. He also spent some of the time sleeping (from boredom mostly). The testing went along well and when it was finished, the doctor gave us a wonderful surprise...we wouldn't have to stay for the third day! When we first were admitted, it was for 3 days, but we only had to stay 2. We went back up to the room and changed his probes in for his mic-key button and then started to pack up our belongings. They got his discharge papers in order and after talking to the doctor, we got to go home (at 8:30pm).

The doc said that the tests showed mild neuropathy. This simply means that he has nerve damage to his small intestines. They have medications that they are trying him on. The nerve damage that has been done is permanent, but the meds should help to make his intestines function better. The reason that he hasn't been tolerating his feeds is because the sm. intestine didn't move things through the way they should, causing his feeds to back up into his stomach, making him gag and wretch.

So far we haven't noticed a difference with the medication, but it may take a while. The doctor also said that she could "up" the dosage if needed.

One last thing for tonight...we got a letter from our case manager and she said that we should re-apply for the Ohio Home Care Waiver. Please pray that this can happen (and soon) as this would allow for nursing help here at home.

Thank you so much for your love and prayers for Eliah.

Hugs,
Chelle

Wednesday, January 21, 2004 1:35 PM CST

I talked to the ped today and asked about the "less than 1%" statement as I wasn't clear enough on what she meant. I also asked what a *normal* bone density was and she said she didn't know the numbers for that. What she did tell me was that "less than 1%" means that no minerals are currently being deposited into the bones. Not good. The referral has been made, so now we wait until they schedule us for nephrology.

Just wanted to update you.

On a happier note...both Eliah and Julia started walking night before last. Eliah decided to try it without the walker and, though the steps were wobbly at first, did pretty well. He is still using the walker for added support and for longer periods of walking, but when he is just going short distances in the house, he mostly goes without. It is such a blessed sight! And little Miss Julia can stand for long periods of time now and even *dances* while standing in place. She also can take 3-5 steps at a time, but not yet consistantly.

Chelle

Tuesday, January 20, 2004 11:31 PM CST

First of all I wanted to say thank you to everyone that has left such sweet notes in the guestbook for us. Your encouagement means the world to us! I'm sorry that I have not been good about getting back to you personally...I think about you every day and thank God for your love and support.

Secondly...I heard from Eliah's ped today and she is filling out the referral paperwork for Eliah to go see the nephrologist. She told him about Eliah and his test results and the new doc said that Eliah sounds like a good candidate for this new treatment/study that he is doing. Eliah has so many different things that are wrong, but because he doesn't fall *completely* into one category or another, diagnosing him has been difficult. Apparently they have had some successes with this treatment, and he seems to think that he might be able to diagnose and help Eliah too. I don't necessarily want a "tag" on him, but if it would help to find a treatment that would work and help him get better, then it would be worth it. I know all of this sounds very vague...I still don't know enough about it to make it any more clear. As soon as I do, I will fill you in too. I do know that blood work has to be drawn before we go in to see him...so that will probably be done within the next couple of weeks (I would imagine).

We have appts this week with the PT/OT on Thursday, dentist and ortho on Friday. If there is anything to post about after those, I will do so. Also, if we have any other stuff come up, or if we find anything else out, I will let you know.

Hugs to you!
Chelle

Monday, January 19, 2004 2:40 PM CST

Well, we just got the results to Eliah's bone density test and they are not good. His doctor (not an alarmist at ALL) was very discouraged by the results. The tests showed that he has less than 1% bone density. We are going to be referred to a nephrologist (kidney doctor) as they are the ones that typically deal with the kind of treatment he may need. His ped said that typically she would Rx calcium and phosphorous supplements, but that she thought he may need to get some more directly to his bones right away. Our hopes are that this is strictly a nutritional issue, because then the supplements would most likely be our course of action. We DON'T want it to be from OI (osteogenesis imperfecta aka brittle bone disease). There is no cure for this...only stuff to help with it. They are working on different treatments for it though.

That's it for now. I will update as I know more.

Chelle

Wednesday, January 14, 2004 10:27 PM CST

Oh my golly it has been a while since I updated. I'm really sorry to leave anyone hangin' that was waiting to hear. I thought that I posted after the appts on Friday of last week.

We went to PT on Thursday, where Eliah used a walker and really kind of "took off" with it. It helped to relieve some of the pain of the weightbearing on his sore leg and gave him some confidence. It was nice to see him feeling so proud and independent again.

On Friday we had our appts with the orthopedic doc and the motility specialist. The ortho took some x-rays and said that the leg was looking good. The ankle was healed so well that the break wasn't obvious on the x-ray anymore. This was exciting to hear. And the femur is looking really good...the break is still easily seen, but there is good bone growth. He said that the next step was to walk, walk, walk. That walking builds strength not only in the muscles, but helps the bone to get stronger too. I asked about using a walker and he agreed that it was a good idea for a while. The one from the PT wasn't available right away, so we borrowed one from a friend until we could get the other one. On Sunday he nearly walked himself to death in the church foyer. He was so tired and just wanted to go home and sleep and didn't want to walk the rest of the night. His therapist suggested getting high topped shoes/boots for him to help with ankle support, so we went and got those today. It really makes a difference.

He has been complaining of pain in his ankle (the freshly healed one) since Monday. He hasn't fallen or had anything else happen. The only thing that we can pin down that might be the cause of it is when he was kneeling by the couch playing and went to "sit" back on top of his feet. He has the bone density testing tomorrow (Thursday) and I was thinking about asking if they would also take a look at his ankle, just to be sure.

Next, the motility specialist...she has adjusted his feeds somewhat and is planning on performing some tests, this month and next, to try and find some answers. He will be admitted on the 9th of Feb for the majority of these. Please pray for him as some of these tests are going to be very long and uncomfortable. We are hoping that this won't turn into another "mystery boy" admission...whether good or bad, we would just like to know SOMETHING so that we can figure out how to make things better for him and where to go from here.

I think that's it for now. I have posted a new picture on the photo page...it is of Julia and Eliah walking together with the walker...two peas in a pod.

Chelle

Monday, January 5, 2004 11:16 PM CST

Awesome news. Eliah started walking tonight! Just little steps and holding onto one of his "walker" toys, but on his own. He just spoke up and said, "my leg better, I try to walk". I about fell over. All day when I would try to get him to stand (so that I could pull up his pants after diaper changes) he complained that his leg hurt too bad, and then tonight the walking. We (Scott and I) were thrilled! Caleb (and Mel) will be so excited to find out about this in the morning. We go back to the orthopedic doc this Friday, so I will post again with any updates. We also go to see Dr. Mousa (motility specialist), so I will give details about that as well. Just wanted to share the good news.

hugs,
Chelle

Sunday, December 28, 2003 11:11 PM CST

Hi. I hope you had a wonderfully blessed Christmas! We had a very nice time and got to spend precious time with friends and family.

Eliah has come such a long way since I posted the last journal page...he has been crawling all over the place and pulling to stand. Tonight he tried (with Melody's help) taking a few steps. They were painful and slow, but an attempt to be celebrated! Today during church Eliah received prayer for his leg and then tonight he said "they prayed for my femur". He is understanding so much and saying so much more than before the cast. The break and casting were perfectly horrible events, but ones that still carried with them a hidden blessing. Because he couldn't explore with his body during that time, he had to find ways to explore with his speech. I guess I knew that might happen, but I never dreamed that he would come so far in such a short time. God is so gracious!

Also in church today, John (our pastor) said, in regard to difficult circumstances...that rather than viewing them as horrible and defeating to view them as a package...a box (like a Christmas box)...no matter what the outside of the box looks like, there is a blessing inside of it...a gift. I instantly started going through each of Eliah's difficult times, in my mind, and seeing them as a box...remembering how defeating they felt each time, and saw how viewing them differently could have totally changed my perspective. Not that it takes away the pain or trials, but just that it helps you to be able to come out on top, rather than being buried beneath them, unable to breathe.

Julia is a HUGE motivation for Eliah...she is trying (already...at only 8 months) to stand...she can stand for 6 seconds at a time. As he sees her standing "like a big girl", he tries to stand and says "I'm standing like a big boy". I think they will be a good match for eachother...they love eachother just as much as they fight and they encourage the other to do new things, just by their example.

Please continue to pray for Caleb. He was saying tonight at dinner that he still feels very responsible for Eliah's accident. He *knows* that it wasn't his fault, but it is just something that he hasn't been able to let go of yet. We continue to encourage him and remind him that no one (God, us, Eliah) blames him for it, but I think it is just going to take time and prayer.

I should go for now. I will update in a few days.

Chelle

Friday, December 19, 2003 11:15 PM CST

We got the best (early) Christmas present in the world today...Eliah got his cast off and can no longer be dubbed "plaster-boy". The removal itself was kind of scary for him...the cast was very thick and hard to get off, but all went fairly well and his skin underneath looked much better than we had imagined. They took x-rays of the femur and ankle and said that both showed good bone growth and healing. The doctor said that he won't be able to walk for a while...his legs have atrophied a lot and things are just very tender. He said not to push him to do stuff...that he would become active as he felt safe with it and felt strong enough. The first steps to be expected are crawling and then pulling to stand by the couch...later will come walking. Kids are so good about listening to their bodies.

Today when we got home from the hospital though, Eliah wanted to try to walk...I held him up so that his feet could touch the floor (with very minimal weight bearing) and let him take a couple of steps. They were painful and he cried. After some cuddling, I took him upstairs and he soaked in a warm bath for a while and then got dressed. Much of the rest of the day was spent sitting on the couch giving orders (lol) and doing little movements. I showed him that he could sit on his hands and knees, so he did that and then started crawling.

Caleb still feels very guilty for Eliah's injury. He said tonight (after Eliah's bath) that "he wouldn't be going through all of this if I hadn't hurt him". I told him that Eliah's injury wasn't his fault...that it was an accident...that it was no more Caleb's fault than it was Eliah's. Accidents happen and this was just one that had a really yucky result. I then asked Caleb if he would help me put lotion on Eliah's legs and "cast area" that was so dry. He did that and I think that it helped him to feel a little bit better about it.

Eliah and Julia spent the evening playing and fighting over toys. She would find them and try to eat them, and he would push her over and steal the toys, leaving her crying. It is a lovely dance that they do. LOL. Julia tried to bite the cat tonight and Eliah pulled her tail. Partners in crime. Needless to say, the cat quickly found a safe haven in the basement.

Julia is pulling to stand and starting to let go. Melody said tonight that she wondered who would walk first...Julia or Eliah. I guess we'll see. They are both as determined as the other.

That's it for now.

Chelle

Saturday, December 13, 2003 8:19 PM CST

The long awaited cast removal is scheduled for this Friday. Yipee!! We are all excited for this to come and hope that everything goes as planned so that it can happen. Eliah has been making "plans" for when he gets it off...saying that he is going to mow the lawn and run the vaccum. Two of his greatest joys in life. The other day he got really mad at the cast and yelled, "I WANT THIS OFF!!" As much as it broke my heart to hear his frustration, I was glad that he could get angry about it and express it so well. I will definately let you know how things go. I don't know if Eliah will have any sort of a brace or splint...the doc didn't mention anything like that at our last appt., but from what I have heard of other kids in this kind of cast, splints/braces are sometimes used. What I do know is that we are going to begin another period of re-learning how to walk and that he will be very fragile for some time. We will also be scheduling bone density testing soon after the cast comes off.

I don't know if I said this before or not, but we got a handicapped parking permit a little over a week ago. It has already been such a help when going to appts and will be needed for some time. We are grateful for "little" helps like this. It makes a big difference.

His speech has really picked up since becoming "plaster-boy". Since he hasn't been able to putter about, he has been "exploring" with his speech and has taken off. It is great. His understanding (when things are said to him) also seems to be improving.

The kids got their flu shots on Wednesday of last week. The doctor wanted us all to get them because of Eliah, but Scott and I weren't able to due to the limitations in the number of vaccines available. The babies are supposed to get a booster in a month, but we were already told that there won't be any left. Please pray hard that Scott and I can stay healthy and that the babies aren't exposed to the flu. We have always taken precautions to protect him as far as a massive handwashing campaign in our home and with our friends, as well as limiting the places we go and who comes in the house, but this year we are thinking that we are going to have to do more to isolate from the illnesses out there. Pray for the wisdom for us to find the balance between protecting Eliah from germs and maintaining *normal* family life. I would say that our greatest risk by far is when we go to therapy where there are so many other kids (and parents don't always use wisdom and bring sick kids).

The other kids are doing well and getting excited for the upcoming holiday. The big kids are most excited about taking a break from school and hoping for LOTS of snow. I Wish I could say the same. =o) I am hoping that when the snow comes, that the older ones will go out and spend some of their energy playing in it. Winter has just started and we already have cabin fever. Julia is growing and getting everywhere...she crawls well now and fast! She also walks everywhere in her walker. It won't be much longer before she is doing it on her own. Eliah is her biggest motivation...she wants everything that he has.

That's it for now.

hugs,
Chelle

Friday, December 5, 2003 10:38 AM CST

We just got back from the orthopedic surgeon...he said that the bone is healing well and that there is new bone growth like there should be, but that the cast (as it is now) will need to stay on for 2 more weeks. We were hoping for a reduction in cast size, but he said that if anything moves from where it is now, it would effect the femur negatively. He said that Eliah's skin is looking pretty good...we had some concerns that the skin was starting to break down, but the doc seems okay with what he saw. He also said that Eliah is allowed to start bearing a little bit of weight and that weight bearing actually aids in bone strength after a certain point. Anyone that has seen this cast knows that weight bearing in this contraption is quite a sight. The cast will come off on the 19th of December and then he will begin learning how to walk again. He didn't say anything about another cast or brace being applied. I don't know if that is because he doesn't have any intentions of using those, or if he just failed to mention it. Guess we'll find out in a couple of weeks. As long as the leg is strong enough, I hope he can be free of any other baggage.

Other things...because of this horrible flu that we keep hearing about that is going around and taking the lives of so many little ones (especially the medically challenged ones) Eliah's doctor wants him to get the flu shot and the rest of us to get it as well. We are scheduled to get them (for the kids) next week. Please pray that no one gets sick before then, as they wouldn't be able to receive the vaccine when ill.

That's it for now. Thank you so much for praying.

Chelle

Tuesday, December 2, 2003 10:58 PM CST

Yesterday was disappointing...we had to let our nurse go earlier than expected. She was a wonderful nurse who loved Eliah (and he loved her) but she had been missing too many days and that was very hard on Eliah and on us as a family. She was only supposed to be here through the 19th of this month as it was (because we don't have anymore funding), but we hadn't planned on having to make this decision. It is a very uncomfortable situation for everyone involved. I tried to explain to him that she wouldn't be coming anymore, but he doesn't understand why she isn't coming back. Please continue to keep us in your prayers (Eliah most of all) as we transition through this time. We will be receiving help from the nursing agency for 4 of our therapy days to "finish out" with the agency. They offered those days to help out. What a blessing.

Eliah is becoming anxious to get his cast off. He keeps talking about what he wants to do when he doesn't have it anymore. He also still talks about the accident and says "I don't want to do that again." Other than that his spirits seem to be up and his "bossy muscle" just keeps getting stronger, and stronger every day. LOL We are praying that his leg will be healed enough by Friday of this week that they will reduce the cast...at least some. His g-tube is very difficult to access, so it would be very nice to have that part of the cast gone. We'll see.

We started going back to therapy today...we are using the wagon as our stroller for now. It seems to work pretty well. We are also applying for a handicap sticker to try and make things a little easier when going places with him. It will be some time yet before he is able to walk well enough.

I think that's it for now. I will post another message after his appt on Friday so that you all know what the doctor says.

Hugs,
Chelle

Wednesday, November 26, 2003 10:37 AM CST

Hi all. Other than the *usual* stressors of having a child in a body cast, this week has gone fairly well. His little body is starting to smell a bit like a month old pumpkin, but we are able to scrub anything that sticks out of the cast...and scrub we do!

His spirits are up and he said today that his leg is feeling better. We have to change his position frequently...every hour to two hours. I bought a beanbag for him so that he would be more comfortable and so far it seems to be working. Keeping his diaper area clean hasn't been as much of a challenge as I had envisioned either...though I tend to imagine the worst. His feeds have been somewhat of a challenge...not horrible, but not great. When he was in the hospital, because they were going to do the cast over again in the OR, they didn't do ANY of his tube feeds...only IV, so when we started his tube feeds back up (especially boluses) it really messed things up. His motility (rate at which his stomach empties)was bad before all of this and now with the immobility added to the "mix" it seems even slower. I had to cancel his appt with the motility doc for now...we have rescheduled for January (after the cast is gone) because she would have trouble doing anything for him in his current state.

We have a great big body pillow that we put in Scott's office chair for Eliah to sit on and then "tie" him onto it with a bedsheet (like a seatbelt). It sounds horrible, but he likes it and calls it his "wheelie chair". We obviously can't do this a lot or for long periods of time as it would put too much pressure on his bottom, but it is a nice transition for him and probably feels the most "normal". We use this mostly for "table time" with play dough, dry cereal, and coloring stuff.

We go back to the orthopedic doc next Friday (5 Dec I think is the date?) and I am *hoping* that he will reduce the cast to just a single leg cast, so that Eliah will have at least a little more movement. I don't even know if this is a possibility, but like I said, I am hoping.

Last Sunday we went to church and got prayer for Eliah (he was in his wagon which worked out very nicely). Afterwards, one of our dear friends asked if Scott and I ever got to get out of the house together without all the kids? We said no, our reasons mainly being Eliah's health issues (phyical and medical), and Julia being so little. She volunteered to come and care for the kids (she is a nurse and has helped with Eliah before) and another family from the church blessed us by paying for our evening out. It was very nice and a good chance for Scott and I to kind of re-group. I don't know how we would do it without the help and support of our friends and family.

That's it for now. Again...thank you so much for your prayers.

Chelle

Saturday, November 22, 2003 0:07 AM CST

Yesterday Eliah's diaper leaked and somehow soaked the cast. The hospital instilled an extreme fear in me about the cast ever becoming wet, even by rain, so you can imagine that I was a bit frantic over this. I immediately started peeling layers of tape, moleskin, and waterproof tape off and did my best to dry out the cast. Next was the task of re-taping the layers...not easy since the cast allows very little room between that and the skin. He was screaming, I was crying...it was ugly. I called the nurse (home nurse, as she had already left for the day)and the ortho's office hoping for some help and was told to bring him in today. When we went in, they said that I had done a good job of re-taping it and that it actually looked better than what the nurses had done. I wasn't quite as confident in my abilities, but they seemed okay with it so I'll leave it at that.

They also did some x-rays to check on the break. The doc said that it looked good...that we needed to come back in 2 weeks. My hope is that the bone will have healed enough that they would possibly reduce the cast to just the one leg. I don't care so much that we have to carry him around...I realize that we will still have to do that, but at least that would give Eliah back some freedom to move the rest of his body. We will have to wait and see what the doc says at that appt.

Otherwise, he is doing well. Still giving orders and being his little self. We got him a bean bag to help make him more comfortable and it seems to be working out well. That's it for now.

Chelle

Wednesday, November 19, 2003 3:59 PM CST

This is an update to Sunday's happenings. We waited until Monday to call the orthopedic doc about Eliah's leg per doctors orders and based on our own personal opinion that his office would be better equiped to deal with Eliah's leg. Well when I called, they said that they didn't take peds cases on Mondays and that we should have him seen at the urgent care in Dublin (Children's Hospital Close to Home). The nurse and I took him up there after talking to the ortho's office, but when we got there they said that urgent care wasn't opened until 3pm. We were aggitated with this as it meant putting him in and out of his carseat in pain several more times as well as the trip to and fro. As his nurse was leaving at 2:30pm she helped to get him in the car and we were once again on our way. They took us right away and did x-rays. It showed a spiral fracture in his femur bone. They questioned me up one side and down the other as these are the kind of fractures you usually see in abuse cases. After being asked several times how it happened, I decided to (once again) ask Caleb exactly what happened (at the time that it happened Scott and I were in our room getting ready for church and could only retell what Caleb had originally told us). He said that he was helping Eliah back over the gate when he, Eliah, and the gate all fell...he landed on Eliah. He didn't know whether his cast had gotten caught in the gate or not.

They decided to splint his leg for transport (Children's ICU medic) to the hospital, but did so only after administering Morphine for pain. I followed the medic in the van with Julia. When we got there, Scott and Caleb were already waiting and explaining what happened to the doc. They decided to do the spica cast (body cast from his chest down, encompassing both legs with a hole for the diaper as well as a hole for his feeding tube) which they did rather carelessly. The cast ended up having many sharp edges that clearly weren't going to be "do-able" for the next 6 weeks. They admitted him so that the orthopedic team could re-do the cast in the OR under sedation in the morning. When the team came by in the morning (with the same doc that did the first spica) they said that things looked fine and that they would trim the sharp edges and "petal" them (using moleskin to soften the edges). One of the nurses (that used to train docs how to do spica's) came in to trim Eliah's and did a really good job. His team of doctors and nurses (up on the floor) were great and were quick to get his pain meds when needed. He had spasms in his leg while in patient and received Ativan for them which caused hallucinations (terrified him) so this drug was not repeated. He also had some trouble with the "infant startle reflex" which is usually an issue when he is hospitalized, but that has resolved since coming home.

We got a special car seat from the hospital that is made for these casts and were able to come home last night around 5:30-6pm. We have an ortho appt next Tuesday (just a check up) and will scedule a bone densitometry test after the cast comes off. His primary doc feels that because of his nutritional issues that his bones might be fragile and in need of some help. She had said this before this last issue, but now it seems more obvious and pressing that we get this done.

Today went pretty well. He is obviously frustrated with not being able to move freely, but we are in the process of designing a "mobility aid" for him to be able to get around so that he can feel independant again...an important thing for a 3 year old. =o)

Caleb has been very sad and feels responsible for what happened. We explained the difference between responsibility and fault...and though he accepted responsibility, it wasn't his fault...it was an accident.

I will post pictures later on tonight so that you can see the cast. Sometimes seeing it helps to understand what he/we are dealing with.

Thank you again for praying,

Love, Chelle

Sunday, November 16, 2003 11:04 PM CST

Yet another stupid hill on Eliah's rollercoaster. Today as we were getting ready for church, Caleb and Eliah went in to wake Melody up and as they were leaving the room (and going over the gate that separates Melody's room from the babies room) the gate fell and Caleb dropped Eliah on his casted leg!! He has been non-weight bearing all day because of the pain and now per doctor's orders will remain that way until we can get an appt with the orthopedic guy on Monday. This time it is his knee and you cannot move him without causing terrible pain. PLEASE, PLEASE, PLEASE, pray that it isn't broken. We are *hoping* that it is just a bruise and that it will heal up with rest. As it was, we had an appt to get the cast off of his ankle this Friday...we are hoping that can still happen and that he doesn't have to get a bigger one.

As long as he sits very still and doesn't move it, he doesn't seem to be suffering too bad. Tonight, King Tut (aka Eliah) was sitting on the couch pointing and giving orders. Gotta love that.

Thank you again for your faithful prayers. I will let you know what the doctor says tomorrow.

Hugs,
Chelle

Wednesday, November 12, 2003 8:55 AM CST

Last Wednesday we had to go back to the orthopedic doctor to get a regular cast put on because the air cast wasn't doing enough. It didn't stay on properly and wasn't supporting it very well. Since getting the regular cast on, though, he has been doing much better. He is even starting to run and jump. We have also noticed that, for the first time in his life, his left foot is able to point forward some of the time. I'm not quite sure how a fracture in his ankle (especially a hairline one) could make much of a difference...maybe just how they set it in the cast...who knows?? I am hoping that this (in some strange way) is part of God's healing for him...that not only will it heal up the fracture, but that it will correct things with his leg. I believe that one day he will be healed...I just am not sure "what" that will look like...if it will come all at once or one thing at a time.

Eliah has been starting to put a few small items of food back in his mouth. I think his baby sister is going to be helpful in this dept. We have started giving her broken up Cheerios and he has been helping her eat them. =O) He may only get a total of 3-4 Cheerios in him, but it is something. Better small steps than no steps. He has also tried (just since yesterday) some "veggie sticks" and nibbles of chocolate. Now anyone that knows anything about him knows that chocolate is an amazing thing for him to taste because it is brown (looks dirty to him) and it is sweet...neither of which is a "good" thing in his book. But again...he is trying.

That's it for now. I hope everyone reading this is doing well.

Hugs,
Chelle

Saturday, November 1, 2003 10:51 PM CST

I have a lot of information to share this time...so please bear with me. Quite some time ago we began to notice limited range of motion in Eliah's left arm. As he has gotten older and gained more skills the limitations are becoming more obvious and restrictive. The orthopedic surgeon has done x-rays and most recently an MRI showing the cause...congenital radioulnar synostosis. This is just a big medical term for "the bones (ulna and radius) are fusing". We discussed possible treatments...2 different operations, but decided against them because the success of both of these balanced with the additional problems that they would cause weren't worth the risk. While we were at the ortho, they checked Eliah's ankle and rechecked the x-rays that were taken and found that there was indeed a fracture at the growth plate. He put him in an air cast and said to come back in 3 weeks for a recheck.

I also said that we had the results to Eliah's Peabody Developmental Evaluation. They were better this time than last, but he still has a way to go. This test was done when he was 41 months old. The results are listed below. If anyone is interested in more specific numbers, I would be happy to share them with you.

Age Equivalent,
Stationary: 28 mos.
Locomotion: 29 mos.
Object Manipulation: 36 mos.
Grasping: 40 mos
Visual-Motor Integration: 37 mos.

Over all the test showed that his (percentile) scores in gross motor were 13, fine motor 42, and total motor 32. The last time we did this same testing, Eliah only scored in the 2nd percentile on gross motor.

Well...that's it for now...I keep falling asleep while trying to type this. If I forgot anything I will add it on later.

Hugs,
Chelle

Thursday, October 30, 2003 11:50 PM CST

It's been a little while since I updated anyone. I have been waiting on results from Eliah's MRI (for his arm) as well as waiting to see where things were going with his ankle before posting anything again. He has been unable to walk for over a week. He is now starting to walk some, but it is still painful for him so we are going to the orthopedic doc in the morning to see what is going on with both issues. I will post with what the doctor says tomorrow. I also plan on putting information on here about his developmental testing. If not tomorrow, then sometime the next day.

Chelle

Tuesday, October 21, 2003 10:32 PM CDT

Today was eventful�.we were getting ready to leave for Eliah�s speech therapy when Melody brought him to me (he was crying) saying that she thought he broke his leg! I tried to gather myself back together and asked her to explain. She said that when she came downstairs he was sitting at the bottom of the steps crying and wouldn�t put any weight on his left leg. I wasn�t sure if it was a �real� problem or just a big �owie� that would take a little while to feel better, so we went on to therapy figuring that if it was broken, it would only be more obvious by the time we got there. When we arrived it still looked and felt the same�his OT checked it and agreed with me that it needed to be examined. We went to see his doc (Mount Sterling) after therapy and she sent us back up to Children�s Hospital (Columbus) for x-rays. The tech said that they didn�t see any breaks or sprains. As glad as I was to hear that nothing was broken, I would still like to know why my little boy can�t walk. Yet another one of Eliah�s �mystery� illnesses. I have heard from several people that hairline fractures are difficult to see and often misdiagnosed, so I am waiting to hear from the doc tomorrow (to hear the full report) and then might make an appt with the orthopedic surgeon to be sure. The doc said that if there were any breaks, that we might need to do testing (bone density) to see what shape his bones are in due to his nutritional challenges.

We also noticed a bump on the left side of his head (as we were leaving the hospital). I don�t think it is a huge deal�he probably got it when he fell, but I will mention it to the doctor when we speak. I tried to have an ER doc look at it to see if they thought it was something needing immediate treatment, but they wouldn�t give any advice unless he registered through the ER. I declined and have just been watching him closely since coming home.

I mentioned to his doctor that the hurt ankle �just happened to be on the same side as his �problem� arm and leg�. She said that she didn�t see an immediate connection. I still wonder if that side might be weaker and more susceptible to injury? Who knows.

He has spent the entire evening sitting on his dad�s office chair being wheeled from room to room. We are doing pain meds and massage to help him until we are told to do otherwise.

Please pray that the doctors will find out what is causing him so much trouble and that we will be able to help it get better quickly. I think this is all I wanted to post, but once again I am tired and it is late. If I have forgotten anything, I will just put it with my next post after I talk with the doctor.

Hugs to you! Thank you for being there for him (and for us). We treasure each and every one of you and your commitment to pray for him. Thank you too for your notes of encouragement in the guest book and otherwise.

Chelle

Friday, October 17, 2003 11:41 PM CDT

We just started this webpage tonight, so this first message is going to be rather short. I will try to be diligent about posting updates as things happen with Eliah so that you can know what is going on and how to pray for him.

He has been battling his way through a "simple" cold...not so simple for him though...he is back on continuous feeds for 20 hours a day and was having to do breathing treatments every 4 hours. We were able to wean him off of the breathing treatments as of yesterday. (Yay!) We are slowly trying to work his rate back up (on his feeding pump), to where we were before, so that he can start having bolus feeds again (where we give him 120cc all at once through his g-tube). He tried to eat a little something tonight and got really sick (gagging and retching). We are still hopeful that there is some way of getting him into a feeding clinic that can help him to become an oral eater. The one that we were going to attend in Cleveland, OH has now relocated to Everett, Washington and from what I have heard, insurance will most likely not cover us to go out of state for treatment.

There is more to tell you...much has been happening lately, but it is late and I am tired. I will write more soon. Thank you for your love and support of our precious little one.

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