History

Tuesday, March 11, 2008 1:11 PM CDT

Well, it looks like we've hit a new milestone in Kirsten's CA journey here... her nostril is OPEN!!! It's been open for 84 days straight now, and I really can't believe it! We're so used to it just closing back up... it feels weird to think that it's actually staying open this time!

We visited the ENT for another follow-up yesterday, and he's very pleased to see how well she's doing. He wants to see her back in June, just to monitor her progress. That's all - nothing till June! I think I'm in a little bit of shock here! Wow, talk about an answer to prayer! I don't know what else to say!

:)

Wednesday, December 19, 2007 1:35 PM CST

I did such a long post on my blog about this already, but I think I'll just copy & paste my story here! (Warning: it's a bit long! LOL)

It's Wednesday afternoon, and Kirsten's bouncing around the house as if yesterday didn't even happen. Talk about the resilience of children! She snapped out of the post-surgery anesthetic state late this morning, and seems back to normal. The vomiting has stopped and her appetite is slowly returning. Her discomfort seems minimal, if anything, and she's busy running around with a princess dress on & playing doctor as I write. I think as she examines the unsuspecting patients in her room, I have a few minutes to post some pictures and details of yesterday's event!

As I mentioned previously, Kirsten didn't get to sleep until really late Monday evening (I'm talking almost midnight!). I woke her up at around 5:45am yesterday, and her mood was fine. Not crabby, not nervous, just normal. Karen came over, and we took off for the hospital. I decided to do the valet parking there for the first time, and it turned out to be much easier for us. We checked in at admitting and had to wait a while there. The staff had toys that patients could pick from, and Kirsten found a green Care Bear to add to her collection of "buddies." She slowly started to mingle with some of the kids there, even asking one fourth-grader to read her a book (of which he so kindly did). When it was our turn, they led us upstairs to the surgical waiting room. All I can say is "WOW!" They completely renovated the waiting area up there & it looks amazing! They went with a train station-type theme, with some brick wall accents & beautiful murials painted on the walls. There was a new play room set up, complete with all sorts of books and toys imaginable. It was wonderful!

From there we were led to where they set her up for surgery. She was weighed & measured, and she was very cooperative as they took her blood pressure & such. (She used to be very nervous and resistant with those things. Now she just asks what they're doing, and goes along with it fine.) They had her change into the hospital attire before the rest of the nurses and doctors made their way in to speak with us.

I had to make sure I waited for the questions - I could tell I was sort of in this auto-pilot mode where I was about to answer before I was asked (I think I've been thru this too many times! LOL)! Dr. Madgy came in to go over the game plan & to visit with Kirsten for a moment. She handed him a picture that she so carefully colored for him last night, and he joked around with her a little. He has such a great bedside manner with his patients - Kirsten mentioned that she loves him! I guess she really feels at ease around him (she's been seeing him since she was around 5 months old!)... I'm happy to see that. I donned my funny little coat & hat & Karen waited patiently while I accompanied Kirsten to the operating room. It was nice that she was allowed to walk down (without being on a stretcher). Up to this point she was doing fine... until the O.R. door was opened and she saw about a dozen people waiting in there for her! She stopped fast in her tracks and had the look of a deer caught in the headlights! We went in and I explained how everyone had different jobs to do, trying my best to calm her down (all she needed was to know what was happening). Dr. Madgy introduced her to the staff ("This is Kirsten, not Kirsten!" - using the correct/incorrect pronounciation of her name) and proudly showed off the artwork she gave him. I think she liked that. More hesitation came with having to put her on the bed, but this is expected. She picked the watermelon flavor for them to put on the gas mask thing, but she wasn't interested in that getting anywhere near her face. A few nurses helped as we gave her positive assurances and I kissed her before I left the room, with her drifting off.
Karen & I went to the waiting room. We admired some more artwork we found in there - there was a tree decorated by a Detroit area high school, and the art was amazing!

Even the tree skirt was painted like part of the top of the Sistine Chapel.
We had our late breakfast and some much needed coffee, then had a great opportunity to just relax and catch up on each other's life. That was definitely great.
After what seemed to be a longer time than I had anticipated, the doctor came out to tell us how things went. He said her nostril is opened larger than it's ever been, and he was leaving her in the O.R. for a while with a lot of packing in there. He wanted it to be as dry as possible before applying the Mitomycin (a chemo drug, used here to help prevent scar tissue build-up). After that, she went to recovery, where we eventually were sent to join her. (Oh, he also cleaned out her ears from any wax build-up. He said her tubes were still there, but ended up coming out. Those have been in since 9/11/01!)

Karen & I were quite warm in there, but we knew it was because the kids coming from surgery would be on the cold side. Karen said how she loved the feeling of the heated blankets, and I caved in and asked for a cup of ice chips to help cool me off! (I love the texture of them!) Kirsten slept a lot, and eventually managed to eat 1/2 of a Popsicle, sleeping in between bites, of course!

One time when she woke, she complained of her ear hurting. The nurse gave her another dose of morphine & our stay was prolonged a little. Doogie Houser's younger brother came in to take out her IV (seriously, we debated about how young he must've been... 12 was a thought!), and when he was done, we noticed Kirsten had some blotchy spots on her face. They dissipated quick enough, though. She vomited, and we saw the spots again, this time in a larger area of her face. Karen saw my concern & got the attention of a nurse for me. She ended up sending in the anesthesiologist, and he told us not to worry, unless it stays. It's just something that hasn't happened before. It happened once again before leaving, but it quickly went away.

Oh, one more thing happened out of the norm for us. Kirsten has a little mark on her cheek. I thought maybe she scratched herself unknowingly, but the nurse had to bring it to the anesth.'s attention. He came & looked at it, and said it might've accidentally been from a certain clamp they use when draping a towel over the patient's face. Dr. Madgy came in, confirmed the suspicion of where it came from, but then stated they didn't use a towel like that - so they have no idea what happened! It's not bleeding or anything, so I'm sure it'll heal quickly enough on it's own. Just weird as to how it happened!

I decided to have them take her down in a wheelchair - much easier!

(Did you see Karen behind her there?!? LOL)
We were home by 2:30, and she fell soundly asleep on the couch.

I went to pick up the meds she needs (antibiotics, nasal spray, Motrin, and Tylenol), and we let her sleep as much as she needed. She ended up taking in a little bit of jello & some of a popsicle, but she also threw up some more. I don't think her vomiting has been as much this time around, and I'm thinking it's because we decided not to give her Tylenol w/codeine this time.

As I said, she seems to be pretty close back to normal now. She's eating more, not throwing up, and hasn't gone back to sleep yet. I'm making sure to give her pain meds regularly for today, just in case. I really think God has blessed her with a highter tollerance for pain, but I want to make sure she's comfortable. I think we'll take a little nap together soon... we can both use it!

Dr. Madgy wants us to follow up with him in a few weeks, so we're just praying that this is IT! I think I'll be nervously watching to see if this closes up or not. Hopefully the excitement of Christmas will kick in soon & take my mind off this. No sense in freaking out about something we can't control! If you haven't checked out her blog, Karen put a little post yesterday with some pictures about our little adventure, from her point of view!

Thanks to everyone for your continued support & prayer for our family - and specifically for Kirsten. We know we have the love & support of so many, and I believe that truly helps keep our hearts at ease a little when we go thru these life events. Many thanks to my pal Karen for being there with us yesterday - from before the sun rose until later in the afternoon, from un-caffeinated brains to a really late lunch, from a blocked nostril to an opened one... and everything else along the way during the day. Your love & support means the world to me - just being there for us was great. Thank you!

Tuesday, December 18, 2007 2:19 PM CST

I've gotta be a little short with the details here since I've gotta get back out & pick up some Popsicles and her prescriptions! Quick version - 6:45am arrive at hospital, 8:15 I leave the O.R., 10:15 the doctor comes to tell us how well everything went, 11:30 we go back to the recovery area, 2:00pm we head home. Kirsten's on the couch resting & just asked me if she could have some candy! I guess she's feeling a little better! I'll post more tonight or tomorrow... details and some pictures! xoxo

Monday, December 17, 2007 10:02 PM CST

I'll be a little brief here, since I just wrote a long post on my blog about tomorrow's surgery! So far, they haven't cancelled. We need to check in at admitting downtown at Children's Hospital at 6:45am. This should be a quick procedure with a quick recovery. I'll post again after we get home as to how things went!

- For those that read my blog, you'll get this... it's 11:38pm and I just finished tucking her back into bed for what I hope is the final time this evening. I told her how she's not going to be happy when I wake her up super early tomorrow, and she told me, "But Mommy, remember - I can sleep at the surgery!" What a little stinker! :)

Thursday, October 18, 2007 8:19 PM CDT

We'll try one more time, and if there's a problem with the laser again, we'll wait until next summer before thinking of this again. So for now, surgery is set for Tuesday, December 18th for Kirsten's CA repair.

Tuesday, August 28, 2007 8:15 AM CDT

Here we go... AGAIN! I got a call from the hospital early this morning saying they need to reschedule Kirsten's surgery yet again. Must be something about this particular laser they use on her procedure, because there's a problem with it & they're sending it out again for repair/maintenance. On the message they said we can do it next Tuesday, but that's the day Kirsten starts first grade, so it'd be an automatic "no" from us. When I called back to talk to them about it, they said it wouldn't be back in time for next week, and they'd like to schedule her first thing the following Tuesday. I told her we can't. Kirsten will just be adjusting to a new school & new schedule - we'll just have to wait. Maybe during Christmas break, maybe during Spring break, but not now. She said that as soon as we decide, to give her a call back & she'll make sure Kirsten's the first surgery that day (the doctor told her to do so - he feels so bad about rescheduling this again). I told her I'd be in touch.

So... we'll just have to wait and see. Maybe we will, maybe we won't. For now, I'll just let her be a "normal" first-grader and have fun being the 7-year old that she is!

By the way - if we would've rescheduled for two weeks, that would fall on 9/11. Kirsten's first surgery ever on her nose was 9/11/01! Interesting!

(Thanks again for all the prayers and well-wishes. I just feel so silly with all the ups & downs about this! Ugh!)

Monday, August 27, 2007 11:15 PM CDT

Tomorrow (Tuesday)'s the big day! We need to arrive at Children's Hospital downtown Detroit at 11:15 & the surgery is scheduled for 12:45pm. We'll deal with the usual of "no food from midnight on" - but I think we can keep her distracted enough. I'll just make sure I let her sleep in good - then it'll just be a get up & get ready to go type thing!

I think she's a little nervous about this. Anxious, really, just to get it over with (especially since we were prepping for it 2 weeks ago & they postponed it). I'm a bit nervous, too. I just keep thinking about the 10/04 procedure. Dr. Madgy tried the laser & drill and still couldn't break thru the bone. I know, I shouldn't dwell on that - it could be completely different this time around! We'll just have to wait and see... and keep praying!

I'm sure we'll be a bit preoccupied with things, but I'll make certain to update this page and my blog later on Tuesday with results. Thanks so much for the love & support - we really appreciate it - all three of us do!

xoxo - Ruth

P.S. Like the new picture above?!? Kirsten got a new haircut last Friday - the first "real" cut in a salon - and donated it to Locks of Love! Isn't she so stinkin' adorable?!? (I'm a proud llama's Mamma!)

Monday, August 13, 2007 9:10 AM CDT

Got the call this morning. Surgery is moved two weeks back to the 28th. Phooey! The laser that her doctor uses is out for repair & won't be back by tomorrow, unfortunately. He's on vacation next week, so we have to do it the following Tuesday.

That bums me out, mostly because we've been preparing for this! I stayed home from church with her yesterday so she wouldn't have a chance of catching anything from anyone, Matt's got the next few nights off work (his nites are usually not consistent, they have to be planned ahead with his boss), etc.

Well, if they don't have the equipment necessary, they can't do it. I understand. I just hope Matt can get the time off again when we need it. Phooey!

Sunday, August 12, 2007 10:42 PM CDT

For those of you that are new to Kirsten's nose situation, please feel free to read back thru some of the previous journal entries here (link is below). You'll find a lot of more detailed info on what's happened in the past few years at least, and hopefully that can answer some of your questions.

Kirsten's surgery is scheduled for this coming Tuesday. Tomorrow (Monday) I'll be getting a call from the hospital to pre-register her, and another call from anesthesia letting me know what time to be there & when her surgery is scheduled for & when to keep her NPO. That should be interesting. This kid will graze from morning until night if we let her! I'll have to be creative again on how to keep her mind off the goods!

I'll post tomorrow after hearing the details!

Sunday, July 15, 2007 10:59 PM CDT

Well, let me first tell you what a wonderful experience we had with Kirsten's CATscan this time around. It was done a few weeks back, and we unfortunately were anticipating a rough time like we had 2 years ago. Long story short, Kirsten did it without medication (first time!) and was so brave about it! She did excellent! (I posted details on my blog on the Thursday, June 28 post.

We saw her ENT last Monday & went over the results. (I put a picture of the CT images on the photo page here.) The doctor suggested we try again. Another surgery, transnasal, no stent, using Mitomycin (chemo drug) around the area... and then we'll see what happens.

Of course, we still have some feelings of guilt about putting her through everything so far & that none of it has done anything. But we also don't want to ignore this. Might this be the time it works? We have to think of everything involved. Now that she'll be in first grade this fall, will kids start teasing her about her constant goopy nose? I think the blockage (with drainage and sinus infections) has effected her breath some, and that can be an embarassment issue as well. If we do this, next month will be the best time to do so - before she starts school.

Tomorrow morning I'll call the ENT to set up the surgery date. Then we can take a little time to pray about it and keep thinking it through. We can always cancel, if we decide to do so. Please pray with us that we'll be confident & clear about what to do. There's still so many other "normal" things of hers we have to deal with (ongoing dental issues, ADHD, etc.), but this one has to be dealt with first now.

Thank you for your thoughts & prayers - and feel free to post a note or two in the guestbook! :)

Love - Ruth

Monday, June 11, 2007 7:34 AM CDT

My little girl is finally about to finish Kindergarten! Only a few more days left & she's already quite eager to be a first-grader... she keeps talking how they've been preparing for it at school! I didn't think it would bother me at all, considering this is the end of her fourth full year of school (1/2 days, 5 days/week), but it is a little. I guess this is the end of the 1/2 day era for her... and I know she's so ready to move on! It's exciting to be happy along with her, celebrating the growth she's had in spite of so many obstacles thrown her way since birth. The journey continues!

On the medical/dental front: we had to change our appointment with her ENT, and so we'll be seeing him this Wednesday (in two days)... I can't wait! I know there's a lot to catch up with there, and I'm really interested to see if he's learned anything new about her nose condition since we last saw him. We're still a little torn about her teeth. I was hoping to get her on the Children's Special Health Care before proceeding with more dental work, but I found out that insurance will only cover towards whatever diagnosis is approved. The issue will be to find a dental diagnosis then, of which I'm not sure she has. We'll see.

Plans are being made for summer already. We're going to take her to swimming lessons (my friends at work already did a wonderful job making up goggles for her!), we've got a vacation planned for the end of July, and we're in the works of planning her 7th birthday party. I think we're going to allow her to invite friends to this one - the past parties have just been family (which is enough), but I think we'll do this one a little different!

I'll post an update after our visit with the ENT this week!

Take care! -Ruth

Friday, February 23, 2007 11:39 PM CST

I can't believe I haven't written in here yet this year! It's been a busy one so far, needless to say! Let's see... the holiday season was good, we've been happily busy with our church (Paradox) and friends there, my niece got married on February 3rd and Kirsten was the flower girl, and my Mom's in week #4 of her radiation for breast cancer (re-occurrence after about 22 yrs.). That's been our busy life in a nutshell so far in 2007!

I finally set up an appointment for Kirsten to see her ENT again in March. It's been over a year since we've seen him, and if you've read the previous posts, you can tell I've been putting it off. I just haven't wanted to talk about her CA. It feels like a pointless topic, but I know I've had the "out of sight, out of mind" mentality about it since her last failed surgery. I feel now we've been dealing enough with her dental issues, but I do want to address this with the doctor. Maybe he knows if there's any connection w/her CA and dental problems. I also want to ask him if he can test her sense of smell. Every so often I do a little check at home... I'm really curious if the way she responds to things is a learned response rather than her actually smelling. A few months back I tried this... did a few different things, then grabbed a bottle of vinegar. I nonchalantly said something like, "How about this? It looks like water." and I held it to her nose. Her reaction? Nothing! She didn't pull back instantly like most everyone else would've! She just "sniffed" (I don't really think she inhales when she does that motion) and said "It's okay." Now, wouldn't that raise a red flag with you?!? So, I hope he can let me know about testing for that!

The next thing Kirsten needs done with her teeth is an extraction & a spacer put in. I'm waiting on word from Children's Special Health Care before I proceed with that. They have some dental coverage, and I'd really like to see if we can get that help. We've been using our insurance, but our dentist is out of network, so we have a pretty hefty bill every time we go. We've been told several times in the past that Kirsten would qualify for this special insurance (certain medical diagnosis must be made), but never took it because we figured we already had good health insurance for her. Well, now we really need it, and we just have to wait for the paperwork to proceed before we know if they'll approve us. Please pray that it goes thru & that our dentist will accept this plan!

I think that's about it for now!

Love - Ruth, the mutant llama's mamma! LOL

Friday, December 22, 2006 8:16 AM CST

I can't believe there's only 3 more days left until Christmas! Talk about a year flying by! Kirsten's pretty excited, and I'm just so warmed to the heart to see how she's loving this season as a 6 year old! She's so cute... she wants this one thing from Santa, but she told me it's okay if he brings something smaller, too! Wow! Can you believe that?!? A child who isn't demanding of what they want Santa to bring! My little sweetie's got such a great heart!

On the medical end of things with my Peanut, we've dealt with some dental issues in the past 2 months. I honestly believe dental should be included in medical insurance... it effects our bodies, it's part of our bodies, so why isn't there better coverage for help with this?!? Sorry... my major pet-peeve this year! Anyway, Kirsten's teeth have a LOT of cavities in them. We went to a new pediatric dentist at the beginning of November, had x-rays taken, and they found around 12 of her 20 teeth effected. A few are so bad that she had to start a round of antibiotics due to infection. This past Monday we went in for some work on them, but since the one that was infected will actually have to be pulled, they started on another area. She had 2 fillings and a silver crown put on, of which she is so proud of! (Calls it her new shiny tooth!) The experience itself could've been complicated... the doctor made sure to write all over her charts how her "right nostril completely blocked" issue was there... but thanks to the Lord her good side was wide open & she was breathing fine! She did bite down really hard on her lip, and that's still healing. We also started the day with some valium at home, and I know that really helped ease her anxiety. So, thankfully it seems Kirsten will be okay returning for more dental work in a month or so. The original thought was to do it all at the hospital in one trip, but now that we see she can handle this okay (and me!), we'll do it in small increments.

Our little girl just keeps amazing us at what a trooper she is! She goes thru so much in life... and takes every bit of it in stride, without complaint! She is SUCH a great example to us! Many people think parents are the teachers, but our kids teach us, too! I love that girl!

I hope you all have a wonderful Christmas season! Take a little time to look at the people around you... try focusing on some of the wonderful and unique qualities that make them special... and even point it out to them, if you want! :) (Hey, it's always nice to hear an occasional compliment, isn't it?!?)

Love & prayers - Ruth

Friday, September 29, 2006 9:54 PM CDT

Two days and a year ago, we found out that Kirsten's transpalatal procedure was a failure. She is one strange bird... the clear way that was made just somehow closed back up. We decided to just let her grow more before we think about any more procedures. And now I'm feeling bad for not returning to her ENT all year! Why? Well, this wonderful doctor has been with us from the beginning. He's the doctor Kirsten knows the most! And for as much as I know that taking care of Kirsten is part of his "job", I also know it's gotta be very frustrating for him to see that this didn't work. In a weird psychological way, I wonder if I've avoided going as a part of mourning? Like mourning for the outcome that never happened? Does that make sense or am I totally out there?!? LOL Anyway... current Kirsten... she seems to be struggling with a cold off & on for about a month now. Poor girl! Coughing and the nose (runny/stuffy). Nothing seems to work, and unfortunately it's not running it's course, either. I really hope for her sake this quits soon so she can just enjoy her life without the interruption!

Kirsten turned 6 this summer and is in Kindergarten now (new school, too). We've been quite active in our church this year, and she always looks forward to the time we go there, which just makes my heart so happy! I took her up to my work today to see about picking out new glasses for her (I work for an optometrist). Neat thing: one of our favorite reps that works for a line that carries kids' frames (Marchon...they have the Disney Princess frames!) just happened to be there when we went in! So... after a quick trip to his car for a few more frames, we found one! It'll be a few weeks till we get it, but we're happy! (Tinkerbell glittery/purple ones!)

Other than that... life is "normal" and good around here! I'll be sure to post if... I need to say WHEN!...we return to the ENT and what the report is. Until then... xoxo -Ruth

Saturday, June 3, 2006 10:42 PM CDT

Over the Memorial Day weekend, we spent that Sunday celebrating a family wedding! Matt's youngest sister, Katy, got married! Kirsten was very excited that she got to help pick out the flowers for Aunt Katy (Kirsten says she bought them!) & give them to her. The wedding was at a park outside & it was just beautiful. Since then, Kirsten's been talking about wanting to go to more weddings! Too cute!

That was a little slideshow I put together of pictures from the wedding. Speaking of wedding/pictures, notice the new photo at the top of the page? We were having a playdate with some friends & the girls (Sarah & Kirsten) were playing dress-up. Kirsten said she was a princess, but she sure looks like a little bride to me! Gulp! She's got 17 and 1/2 years before that can happen!!! LOL

Kirsten's got only 7 days of school left. It's hard to believe it's the end of the year already! I think she'll really miss being in school this summer... we'll have to keep her busy with playdates and such. Medically, things are the same. No changes. I think I'll have to cave in and take her to see her ENT before the next school year starts. He likes to see her quarterly, but... you can read my last entry to see why I've put it off!

Happy June, everyone! xoxo - Ruth

Sunday, April 16, 2006 5:19 PM CDT

Happy Easter! What a great day to celebrate & rejoice in the life God has given us! We had a wonderful time at church today... I especially had a great time worshipping God & thanking Him for all He's done for me... and for my family! After church we met with some of my family to eat at a local Applebee's. It's my Dad and my brother Paul's birthday today, so it was nice to visit with family & spend time with the birthday boys!

Kirsten's been doing pretty good. It's Spring Break from school this week, so I'm finding things to help keep her busy. Her health has been fine, just fighting off little colds like everyone else lately! I just feel bad when she gets a cold... with it her good nostril gets plugged up, so she ends up with no working nostril to breathe thru. I can't imagine how frustrating that must be! I still haven't managed to set a visit to see her ENT, mostly because I just don't feel the need. I know what he'll say, and we're not interested in going thru another pointless surgery again this year. Maybe in a few, but not for now.

Nothing else really to report! Maybe next month will be more interesting with school nearing a close! I pray all is well with you & yours! Take some time to enjoy LIFE! :)

Love - Ruth

Sunday, April 16, 2006 5:19 PM CDT

Wednesday, March 1, 2006 10:18 PM CST

Can you believe it's March already? The weather seems uncertain of if it's going to warm up or not... we still have those cold days around here! Today is a neat day... a friend of mine is celebrating her twins' first birthday and my parents are celebrating their 54th anniversary! Milestones for them all!

Kirsten is doing amazingly well, I must say! She's thriving in school, learning daily. It's fun to see the new things that she's grasping on to & I love encouraging her and telling her how proud we are of her! Her teacher, Mrs. Steffens, gives the kids practice sheets of letters to work on daily. Last week there was no school (Winter Break) and Kirsten got 19 pages done at home that week! Sometimes she gets frustrated, but I know if we sit and give her some tips, she plugs on and does awesome! I really appreciate what her teacher's been doing with her & the class to prepare them for Kindergarten next year (she's in Developmental K. this year) & I feel much better that Kirsten has had this extra year to grow.

Physically, I'm happy to report no problems! Actually, she's very eager to wear big girl underwear at night now, so we're aiming for doing that next week. (Remember, she was a bit lagging in that area... we had so much else to focus on with her development & that was the last to happen.) She still has her "normal" nose issues with the goopiness, but it hasn't been too bad lately. No sinus infections that we can tell. One pair of Kirsten's glasses broke about a month ago, and I took her into my work to pick out a new pair. Wouldn't you know it, she picked the same kind that broke! Of course, they were pink! Silly me to think any differently! LOL (They were actually both Disney Princess frames that she had... one pink, one lavender! The new one will just be a smidge larger, that's all!)

I don't have any new photos to post yet, but will if I get any! I hope this Spring is a wonderful time for you all and your families! I pray that God shows you some amazing changes in your own lives, too! Take care!

Love - Ruth

Wednesday, February 8, 2006 7:35 AM CST

Isn't the photo above so cute?!? That was taken last October during a class field trip to a pumpkin patch/apple orchard. There was a little petting zoo there & when I saw the llamas, I just had to have her pose with it! She was just in a silly mood, laughing during the picture!

Not much going on over here this month. Kirsten finally healed up from last month's illness, and is just plugging away at life as a 5 year old now! She graduated from her speech therapy a few weeks back, so now she doesn't need any special services! At school she's learning a lot with writing & learning the alphabet... they focus on one new letter each week. She gets practice sheets to do at home, but sometimes it's a bit of a struggle to get her to do them. We've definitely been learning what works for her and what doesn't! I know better now as to what her mood is like & whether it seems like she can focus on homework or not. I know pushing her when she's not able is just a losing battle for us all! So, it' been neat to see us learn together thru this!

Next week is Valentine's Day & there'll be a little party in her class. Yesterday they had a celebration for their 100th day of school, and the kids had fun projects and things to do for that. The main thing they had to do was make a posterboard full of 100 things. Kirsten came home talking about it & wanted to glue 100 MnM's on it. I told her I couldn't justify wasting 100 yummy chocolate MnM's on it, so I found 100 MnM stickers she could use instead! :) Can't waste the chocolate!!! LOL

Happy Valentine's Day, everyone! xoxo - Ruth

Saturday, January 14, 2006 5:13 PM CST

We had a new experience this week! After sending Kirsten to school that first week, I thought things were going back to normal... I thought wrong! This Monday she woke up coughing, but it was a small dry cough, so I sent her to school. She came home & it was a little worse. As the day/night went on, it progressively got worse. A fever started in, and I ended up taking her to a doctor Tuesday morning. She figured it was just a virus (no fever at the time & her lungs sounded fine), so we went home. Later in the day she had the fever back & she stopped eating, drinking, and going to the bathroom. She just started sleeping a lot. During the night she was restless at points and one time when she woke up she was acting REALLY weird... I chalked it up to a nightmare, but I still felt odd about it. Wednesday morning her fever was up to 103.4 & I gave her some Tylenol & she passed out again on the couch. She woke up about an hour or so later & did that weird thing. At that point I had the strong feeling it wasn't nightmares, but that she was hallucinating from the high fever. After some calls around, we took her downtown to Children's Hospital & had her checked out. I lost a day of work & we lost several hours of sitting around doing nothing, but long story short... the strep culture came back negative and the chest x-ray showed a lot of asthma. They didn't know what the fever was from, but we started her on antibiotics & I kept her going on Tylenol/Motrin for the fever. We also started breathing treatments 3x/day. By Thursday morning her appetite and personality came back and she's doing much better now! She's still coughing quite a bit, but no fever since Thursday. So... I think I'll wait until Tuesday and see how she's doing. I might have to take her back to the dr. then, but at least the worst is over. That hallucination bit really scared me! First time for that! And hopefully the last!

Oh, and on a good note... 2 new babies joined my family this week! On Sunday my niece Angie had her second child, Katrina Josie. Then on Friday her sister, my niece Stefani, had her first child, Tyler William! Both babies are absolutely gorgeous & I was very excited to be able to see them both on their birth-days! Proud Great Aunt Ruthie here!!! :)

Love to all! - Ruth

Monday, January 2, 2006 2:16 PM CST

Happy new year! We hope everyone had a happy & healthy holiday season! Ours was good, minus the little cold bugs going around everyone everywhere! Kirsten had a really nice Christmas. It was good to do gifts on a smaller scale... that way we really seemed to enjoy and appreciate what we did get! Ya know? Kirsten goes back to school tomorrow & we all can't wait! LOL She's eager to get back to her friends & I know the structure will be good for her to return to. As far as her nose goes... it's business as usual... goopy and runny and when she's got a cold like this, she just has to breathe thru her mouth. She really doesn't know any different, so it's okay. We have another visit with her ENT in a few weeks & I'm a bit curious to see if he found any new info out there.

I'll be sure to update at least once a month whether there's a change or not! Take care! xoxo - Ruth

Friday, December 9, 2005 10:12 AM CST

Happy December! Just wanted to drop a quick update for anyone still reading this! :) Things have been going well for us at home... just doing holiday things & having fun! Kirsten's been doing wonderful in school... it's great to see her grow & learn so much... we love it! Her nose is still plugged as "normal" for us & she's fine with it. Going thru the Kleenex like crazy, too... as usual!

We're looking forward to the Christmas season... time with family & friends & some wonderful Christmas programs at church. I hope you & yours have a wonderful season, too!

Much love - Ruth

Saturday, November 12, 2005 3:22 PM CST

It's November! I can't believe this year is nearing an end already! I guess when you're busy, the time just passes quicker... I wish it'd slow down!

We're taking a break from the internet/cable at home for a bit, so I'll be updating this from another location when needed. It's funny how much free time I find I have now with no internet... go figure! :) For the past few weeks we've been dealing with colds at home. Kirsten was out of school this whole week with a minor one that had a mild fever running with it. I can't wait to get her back to class on Monday... she needs it! The structure, the energy outlet, the time with friends... it's definitely something she thrives in! And with her nostril blocked up, we're back to how things used to be with sickness... she just can't breathe out of her nose at all! At least it's nothing new to her, so she just takes it all in stride. Makes me think before complaining about a stuffy nose that I might get!

I'll drop a little post next month sometime to say how things are going. It's hard to think of the holidays, but they're about here! I hope you and your families are well during this year's season. Much love - Ruth & Matt & the plugged-up-but-still-energetic-&-happy Llama :)

Thursday, October 20, 2005 8:35 PM CDT

Monday we went for our check-up appointment with Dr. Madgy. He said he did extensive research in the past 3 weeks & found nothing documented of this happening (restenosis after transpalatal choanal atresia repair! LOL). I asked if he wanted a CT (CATscan) done, making comment how it must be scar tissue or something because bone doesn't grow that fast (it was 2 weeks). Guess what he said? He said it could be bone! Can you believe that?!? My Peanut's a miracle girl! LOL He said what we need to start doing is aggressively taking care of each & every cold she gets, including her reoccuring sinus infections. He said he'd like to see about maybe doing this again in a year, after she's grown more. I said we were in no way eager to try again any time soon, so we'll just talk as time passes. We go back in January for our next visit.

So, life is back to "normal" as we know it with Kirsten's nose! She's used to having to wipe it all the time (she can't really blow it since there's no air to push gunk out!), and she's always been great about it, too. We'll just plug along during our fall & upcoming holiday seasons & have fun with our little growing 5 year old! :)

Thanks for all the love & support & well-wishes & prayers that everyone's sent our way. It means so much to know that we have so many people in our corner, rooting for Kirsten (even since her little preemie start at life!)! I'll just be updating some things about Kirsten & our family maybe once a month or so. If and when another procedure comes up, I'll be sure to post again! We love you all!

Much love & thanks - Matt, Ruth, and Kirsten

Friday, October 7, 2005 9:04 AM CDT

We've got our next appointment with Kirsten's ENT on Monday the 17th (this month). I'm very eager to know if he found out about any cases documented about this yet. Not like we're about to jump into any new type of procedure, but to know what our future options are for Peanut's little nose. She always gives us plenty of other things to keep us busy with... she's a kid! :)

If you think of it, please keep Matt's Grandmother in your prayers. She went into the hospital on Tuesday with kidney/renal failure & is septic (I believe that's the right term/spelling!?!). She's elderly & had been in a nursing home for a few years now. Pray that she'll be pain-free and feeling Peace when she goes Home to be with God (and her husband). Pray for the family (she's Matt's father's mother), too. Thank you.

Love - The Silly Llama's Momma

Tuesday, September 27, 2005 4:41 PM CDT

Well, do you want the good news first or the bad news?

Good news: She did well during the procedure & is at home recouping now. She had a tiny bit of pain while there, so we got some Tylenol in her before leaving the hospital. She's thrown up a few times but is now hungry & happy (it's almost 6:00).

Bad news: The thing we thought couldn't happen, did... it's blocked. Dr. Madgy said there's like a membrane (or something) blocking across, and when he poked at it, it was solid. Hard as a rock. As to exactly if it's bone or something else, we don't know, but those details don't matter. He was dumbfounded, as are we. He said he's NEVER seen this happen, and was amazed at how quick it did, too (it was within 2 weeks of the stent removal). He plans to start doing some research to see if there's other cases out there of restenosis after transpalatal repair like this (narrowing back up after this type of surgery), and will let us know what he comes across. He was just so blown away that this happened. We hadn't even tossed the possiblity around in our heads because we figured it was impossible. Seems this is one for the medical books.

I'm just... sad? Surprised, amazed, a bit intrigued (as to how it could be possible), and bummed for my little Peanut. Sweet child... I know it'll be fine with her.

Thanks for the prayers - Ruth, Matt, and Kirsten (guess she's set on staying my little llama!)

Tuesday, September 27, 2005 8:37 AM CDT

Getting ready to go in again... we have to be there at 11 this morning. Kirsten's doing pretty well without eating & I'm just trying to keep her distracted! I don't know if I wrote this or not, but a few weeks ago she talked to me about her nose. She was wiping a bunch of goop from her nose and said to me how her nose is all plugged up again. She said her surgery didn't work & that Dr. Madgy has to do it again! And now here we are! Actually, it's not a major procedure, but still!

I'll be on tonight to post how it went! Thanks for praying!

Monday, September 26, 2005 11:42 AM CDT

I have mixed feelings about today's visit with Dr. Madgy. He was clearly bothered by the fact that Kirsten's nose is blocked up again. Near the end of the visit he said that he's never seen a transpalatal repair plug up again, especially this soon. He does surgeries on Tuesdays and said he wants her in tomorrow. He'll do a nasal endoscopy to clear out whatever's there. On a last note, he mentioned if for some rare reason it's blocking by bone or scar tissue again, we'll talk about our options.

I was glad to see him so upset about it because that let me know he wasn't expecting it & wants to fix it immediately. I'll find out later today what time the surgery will be & will post tonight of that.

Friday, September 23, 2005 11:20 PM CDT

Has anyone else misplaced the month of September, too? I cannot believe how quickly the time has just zoomed past us here! I'll give a little update on how things are...

I think Kirsten & I are finally getting used to the fact that we have to wake up so early for school during the week. I know, go ahead and laugh at us! I was spoiled last year when she went in the afternoons, but come to think of it, her first year was in the AM...! We're more night owls around here, but we're adjusting! Kirsten seems to like her class (and new bus!) fine & still enjoys going to school. I had an opportunity this week to visit her school (for a Cirriculum Night) & was pleased with what I saw, mostly about her class. I met the teacher, which was quite important to me! I had to see what kind of person not only were we entrusting our daughter's care to, but who we were potentially driving crazy! LOL Her teacher seems funny... and committed to finding specific ways to meet each child's needs as individuals and as a group. I hope Kirsten enjoys her as much as I think she would!

Monday morning we go back to see Dr. Madgy for the post-op follow-up (one month after surgery). Unfortunately, this nostril has been blocked for weeks, and I'm afraid of how he'll have to get it opened up again. We saw Kirsten's pediatrician for her 5-yr.check-up a few weeks ago, and he said it looks like a big scab in there. So...? I'll be sure to post after to let you know what he says.

Until next time... Ruth, the plugged-up llama's mamma

P.S. She's got a slight cold this week, too, which means she sometimes has NO working nostril! Just like it's always been! :(

Wednesday, September 7, 2005 10:03 AM CDT

Hello everyone! I know it's been a while since I've updated here, but I'm waiting for some new pictures that I can put up, too! I'll just be sure to add them later when I get them.

Kirsten's doing well now without that tube in her nostril. It was interesting to see her protect it for the first few days, just reacting like normal (as if it was still there), and now she's used to it NOT being there anymore! I'm a bit concerned because that nostril seems blocked now. Kirsten said it's because the tube's not there anymore, so she can't breathe thru it! Awww! I spoke with her ENT's nurse yesterday & she instructed me to use some saline in it. She said not to suction it since it's probably just a clot & that would cause bleeding if I did. If it doesn't seem to open from the drops by the end of the week, I need to call back. I know we have our surgery follow-up at the end of the month, but they'll probably get us in sooner if this doesn't seem to do the trick.

Can you see how confusing this all can be?!? Ugh! I can't help but think something's wrong again. Just from our past experiences... but still... this has to be something minor this time around, after all we just went thru. It just HAS to be! So, I'm not gonna freak out about it, I'm just going to trust that Kirsten's in God's care & take it as we go! :)

Kirsten's back to school in a new class this year, and she seems to be liking it so far. I still have to meet her teacher & see the room she's in. I think there's a meeting in a few weeks where I can do that.

Again, I'll put up some birthday party pictures when I get them! Love to you all! -Ruth

Wednesday, August 24, 2005 9:04 AM CDT

GOOD MORNING! What a good morning this is, too! Kirsten had her stent removed yesterday, and now she's breathing through both nostrils on her own for the FIRST time in her life! I'm so happy for her! And in the fashion normal to a child, she's just going about her usual business as if nothing's changed! Amazing, isn't it?

I'm interested to see how she speaks today... her voice. Yesterday she sounded kind of stuffy after we got home, so I'm waiting to see what her normal speech will be like. Will it be slightly different now that she's got both nostrils open? Will I even notice? I've never been sure if she's really been able to smell things (she'd "sniff," but I'm never certain if she's actually smelling)... I think I'll mention that to her ENT at the follow-up in a month.

So... we had to be there at 11:15 yesterday morning, and Matt's Mom came with us (Matt works midnights so he was sleeping). Kirsten was a bit annoyed that I wouldn't give her anything to eat, but I let her see that I wasn't eating either & that we'd both eat after we get home. I made sure they gave her some Versed (ver-said) like they did last time to help calm her down. Little did I know that would effect her differently this time around! I just looked it up on WebMD and it says, "This medication is used to relax and calm patients (generally children) before certain procedures, or before anesthesia for surgery. It also helps decrease memory of the event." We remember someone telling us the last part last month, which we thought was nice. This time it didn't happen, only because the procedure was so quick! I went back into the O.R. with her at 12:45 & we went back to meet her in recovery at 1:15... FAST! What took the longest was all the prep work on Kirsten! Dr. Madgy loosened the stitch in her nose & removed the stent. He put some more mitomycin in the area & took a picture. I had him save the tube for me (I'm weird like that! LOL) & it was interesting to see how short it was. One we removed at home a few years ago was much longer. He gave us a copy of the picture, too. He said this side is opened wider than the other side now! (She was born with a deviated septum, too, but that won't be dealt with for several years.) He said it looks wonderful up there!

Well, the problem from the Versed/anesthesia was that she just wasn't under long enough. I guess when you're knocked out for a while, you sleep the effects of the Versed off, but that wasn't the case this time. She was asleep & awake too quickly & it caused her to have some MAJOR crankiness! She didn't stop whining/crying/moaning/yelling until we got in the car & were driving home! UGH! She even pinched me HARD one time when I was holding her & that is NOT normal behavior for her! It was hard... my instinct was to discipline her, but I had to hold back because I knew this was not really her, but her influenced by drugs. Drugs are bad!!! LOL I was very surprised that she didn't nap at all on the way home or after we got there. She just stayed awake all day! She vomited a few times, but the little sweetie made it to the bathroom on her own both times! She was bummed that we wouldn't let her eat as she normally would, but that was because of the procedure. She slept good & woke up a little sweetheart today! I'm lovin' it!!!

I have some pictures that I'll put up as soon as I get them. Erin took some good ones at the birthday party on Sunday & my Mom-in-law took one or two at the hospital yesterday. I'm just excited this is over & so happy for Kirsten! Please continue to pray that this is IT! That this surgery does the trick and lasts forever for her... with no more bone growing in there to block it back off!

Thanks to all! We love you!!! -Ruth

P.S. Happy 5th birthday, cousin Sami! Looking forward to celebrating both girls' birthdays this coming Sunday! :)

Thursday, August 18, 2005 12:26 AM CDT

Countdown! Five days to go until we get this thing outta her nose!!! I can't wait! Now that goopiness around her stent is inside it as well. She complains every time we suction inside of it, saying it hurts her. Bummer, since she was so good with it from the time we got home until now! So, we just do it 3x/day now to make sure it's as clean as possible. I just can't wait to see what happens when this stent is removed!!! I'm praying God's Will is that this is IT!!!

We didn't get to do her bday party Sunday with her cousins. Things just didn't work out right, and it worked out better that we didn't do it. She really wasn't feeling well that afternoon & ended up having a major meltdown later in the day! This coming Sunday we'll have one w/my parents & my brother Paul & his 2 girls (18 & 20 yrs.). We lived with Paul & Erin & Leah for a while, so Kirsten basically grew up with them! It'll be nice... I'll be sure to pick up balloons for her to get all excited about! Oh, simple things! Gotta love it!

Here's some pictures that were taken a few weeks back when Erin was over visiting. She even let Kirsten use her digital camera & it was so funny! Kirsten would take a picture & then say, "Perfect!" Too cute!!!

Image hosted by Photobucket.com
This is the best we could get of the stitches in her mouth.

Here's one Kirsten took of Erin! They play monsters a lot!

Kirsten wanted a picture of the show she was watching!

Bathtime before Erin leaves... look at the veins on that forehead!

Saturday, August 13, 2005 7:33 PM CDT

Hello! Here's the update from this week! On Wednesday I took Kirsten in to see her ENT. I was concerned about her complaints of a sore throat (she'd say her mouth hurts, I'd ask where, she'd say in the back, I'd point to her throat, & she'd say inside there), and they said I could bring her in. Turns out she probably has a sinus infection. Her throat is quite red, & she's been gooping out around the tube in her nostril. As the week's been progressing, so has the goop. I feel back to the old days! Wiping her nose, except now we have to watch not to push the tube in! And this time it's probably draining down her throat, which can contribute to that discomfort she's been having. She's been on antibiotics since the surgery, so he told me to just up it a little. He told me if she was still uncomfortable by the end of the week, to call & he'd squeeze her in for surgery next Tuesday. I can tell it's getting worse (the goop at least), but she seems to be feeling well enough. We really want to see this stent stay in as long as possible, so we'll just wait for her surgery on the 23rd.

Tomorrow we're finally having a birthday party for her (we had to postpone them because of her surgery), and she's soooo excited! I'm having 6 of my nieces over & it should be fun! :)

Love to all - Ruth

Sunday, August 7, 2005 8:16 AM CDT

Hello! Sorry it's been a bit since I've posted, but this past week has just flown by! Kirsten's definitely moved out of her extra-cranky post-surgery stage & is back to being sweet & cute & just plain adorable! (Minus the normal bursts of stubbornness or such! LOL) As of now, her mouth doesn't seem to be hurting as much, if any. She complains about stomach pains some, but I'm wondering if that was from the week-long bout of the runs she had (from the antibiotic)...? Her nose is the only other thing she comments on that hurts, and it's not too often. The stent still gets knocked back into her nostril, and I hate having to pull it forward. We have a good system that's been helping her (she'll hold a mirror to watch), but she often grabs my hand to stop me at the last second (when it starts to hurt her) & that just ends up causing more pain for her. When we pull it forward, she complains about the other nostril hurting. I wonder if that's just pressure from the stitches? Her eating is completely back to normal, which is wonderful! Oh, and the irrigation/suctioning has been going fine... with her help, too!

For those of you with children who've had special needs, have you ever had one of these moments? I took Kirsten to see a counselor about a week ago (wonderful doctor, too!), and she was asking me a whole slew of questions. I could spout off everything from her first surgery to when she cut her teeth (since she was very delayed with that!) to what meds she's been on. But the basic "normal" questions I should know... I didn't! When did she start walking? Talking? I couldn't for the life of me remember! And I'm not even sure if I managed to write those down! How embarassing!!! Any of you experience that?!?

On the last note, we have her final procedure set up! Tuesday, August 23, we'll go back in to have the stent removed. I can't wait to see how her little nostril works after that!

I'll write more later in the week! Much Love - Ruth

Monday, August 1, 2005 9:45 AM CDT

Well, great news! Dr. Madgy said her nose/mouth looks great! Hooray! He checked her ears, which have been a bit over-sensitive to sound (they cleaned all her wax build-up out during the surgery), and he said those are fine. She's just probably not used to sounds being as loud as they really are! I asked him my concerns about the stent in her nose, and he said I've been doing all the right things for it. It's normal for it to slide in some, and I just need to keep gently pulling it forward when needed. Oh, and guess what? We can feed her anything she wants now! He told her he wants her to start eating pizza & chicken nuggets & french fries... ya think he can tell how skinny she is?!? LOL So we'll get planning on her birthday parties now! THAT was the news she was wanting to hear!

I'll be getting a call this week about setting up her next surgery. What he'll do then is remove the stitches & the stent & re-apply a bit more mitomycin (the chemo drug)to the area. She'll be knocked out again for this all, but it'll still be outpatient. No biggie! The stitches in her mouth will dissolve in about 90 days, so we won't worry about having those removed. The procedure will be in 2-4 weeks, but I'll make sure it's closer to 4, since I'd like to see this stent in as long as possible. School starts at the end of the month, I believe, so it'd be nice to get this done with before then! New class, new school, new nose! :)

I'd better go... she's so excited to be able to eat "crunchy foods" that she's raiding the cupboards again! Yeah!

A happy llama's Momma - Ruth

Sunday, July 31, 2005 1:44 AM CDT

Funny... I thought I put another entry in here a few days ago, but I guess I didn't! Huh! Well, things are definitely looking up over here! Kirsten has her appetite back, and is eating/drinking much more now. I'm still a bit concerned about her intake, especially since she's had nothing but diarrhea all week (most likely from the antibiotics), but we're dealing with that as best as we can. You know, it can't all go smoothly... something HAS to keep us busy here! LOL We have her post-surgery follow-up appt. early Monday morning, and I'm looking forward to talking to the dr. about the concerns we have. (Probably the main one being how her stent keeps backing up into her nostril... that whole issue.)

I can't remember if I told you, but on Tuesday (Kirsten's 5th birthday), we took her to Build-a-Bear Workshop for a little celebration! She was SOOOO looking forward to going on her b-day, and it turned out pretty well! She ended up chosing a white kitty to make, and it was cute watching her figure out the whole process! We let her pick out an outfit for it (thanks to some extra b-day money from some family!) and now it's her faerie/ballerina/Princess Kitty! It's a bit too large to fit in her bed with her at nighttime, so I said we can go back later with more b-day money she got & get the pink kitty bed she saw there! (Of course they HAVE to have all sorts of money-gobbling accessories like that, don't they?!? LOL) So that'll be another fun afternoon down the road! Now we just have to plan her little b-day parties... she can't wait for decorations, balloons, people, cake, and PIZZA! :)

She already woke up once tonight with some pain (she bumped her nose, the tube went in too far, and I had to pull it out... poor girl!), so now that she's back sleeping soundly, I think I'll try to do the same!

Tuesday, July 26, 2005 9:01 AM CDT

Happy 5th birthday, Kirsten!
Okay, just had to start with that! Now, on to a much-needed update! :) Sorry I've been M.I.A. for a few days... we've had computer issues, but I've also just been busy w/Peanut's recovery here! This one has definitely been a rough one... all others in the past were a piece of cake compared to this one! Ugh! LOL We've mostly been struggling with her not eating/drinking/taking her med for pain. Here's where I left off...

Thursday we were released from the hospital. They gave us the option to stay another night, but we decided to just come home. (Of course, we got stuck in rush-hour traffic by the time they released us!) The suctioning machine was delivered that evening, and Kirsten woke several times during the night. Friday she just wasn't eating/drinking, but my main concern was her stent going back into her nose. Called the dr. & they said to bring her thru the ER. My Mom took us down, and the dr. ended up showing me how to gently pull it back forward. Oh joy! NOT! Every night she seems to wake up a few times, and I end up giving her pain meds to help her, and she usually ends up sleeping with me (good for her, no sleep for me!). Yesterday seemed to be a big breakthrough for her with eating tho... she finally started to! Woo-hoo! She says the most pain is in her mouth from where the stitches are, but she keeps trying to refuse meds because of the yucky taste of it! Poor sweetie! Alternating w/less potent meds seems to help some. I'm still worried about the stent... it continues to go back just inside her nostril, and I'm not liking that. Makes it hard for irrigating/suctioning and obviously for her to breathe through. We have her follow-up appt. next Monday, so we'll see what her dr. says about it then.

Today's her 5th birthday... I can't believe she's FIVE already! Rented a movie to watch as a family tonight, and hopefully she won't be super-cranky all day... I'm gonna try what I can to make it a fun one for her! We have to wait a little while on parties for her, so hopefully today will be nice enough to hold her off! :)

Thanks SO MUCH for all your well-wishes, calls, and prayers! To be honest, it's been a bit hard for me this time around. I just thought I was a pro at this, and then I find it's quite different for this recovery! But we're making it! :) Much love to ALL of you! :) - Ruth (& Matt)

P.S. Here's a few pics of her thru the years... (sorry, having trouble getting the first one here smaller! It's her first year photo!)
Image hosted by Photobucket.com

Tuesday, July 26, 2005 9:01 AM CDT

Thursday, July 21, 2005 10:59 AM CDT

I can't believe we're still here! I'm off searching for coffee... missed the only cart that comes around when we were napping this morning! Ugh! We had a roommate for the first time, and they came in at 5am, so we were up for a few hours then. Poor kid had his feet run over by a car and he was in a lot of pain... and quite vocal about it! Thankfully it didn't scare Kirsten, she was just concerned for him. After an hour or so, they realized he was put in the wrong room, so they moved him (they don't mix genders in the rooms). Now we have a new roomie, a little 7 week old baby girl! I've been talking with the Mom & she seems nice. I love having good neighbors! :)

Please pray Kirsten starts to eat! We ordered a late breakfast, and she's just picked at it. She hasn't been vomiting at all today, but she complained about her mouth hurting. We just gave her some regular Tylenol, and hopefully that'll help. Just a few nibbles of cottage cheese & a spoonful of vanilla ice cream is all she's had. She won't even drink water or juice. I just don't like this phase... a bit worried for her. My little Peanut's too little not to be eating! And at home, she normally grazes ALL DAY LONG! Very different now! We'll see!

Wednesday, July 20, 2005 4:19 PM CDT

Hello! It's been a bit frustrating with various factors, but we're still so happy all went well with the surgery! Kirsten did some vomiting last night, which was expected. She's been on morphine and will move to something else when we leave. We were thinking we'd be leaving today, but the dr.that just came in said we should wait till morning to make sure she's been eating well enough first. That's been one of the downers today - eating. The doctors this morning (7am!) said she could have soft foods, so I looked over the menu with her (since she started asking for breakfast) & we made our decisions. I called to order the foods, & they said she was still on a liquid diet. Several hours of repeated questioning/reminding by me and whining by my hungry child, and nothing was changed. She finally gave up on wanting food (except the occasional nibble of a popsicle) and slept a lot. Poor girl! I tried ordering for me, but they said I'd have to go downstairs (we're on the 5th floor!) to the cafeteria & purchase a gift certificate to use for it. I wasn't about to leave her up there on her own! No way! So... I'm just now about to eat something since Matt came (it's after 5pm). Seems to have been a bit of miscommunication with various small issues with the staff, but at least Kirsten's here if there's a problem. I picked up a balloon downstairs and that really perked her up! :)

So, one more night of a few hours of uncomfortable sleep for me, and hopefully one more night of rest & recouperating for Kirsten, then it's back home to our comfort zone! I'm praying at least the vomiting is done with by then, so I'll just have the other things to contend with! You know... antibiotics, pain meds, ointment on her nostril, suctioning her nose... all those fun things! :) I'm ready for that!

Thanks again for the prayers & I'll update hopefully from home tomorrow (Thursday) night! Love - Ruth

P.S. For those of you who know my taste in weather, let me just mention that the air conditioning in the hospital was out on Monday, and it's still not quite up to par! Last night was... well... warm for me! :)

Tuesday, July 19, 2005 10:33 PM CDT

Hello,

Ruth will update this when she gets home. The hospital computers were closed by the time we had a chance to use them.

Kirsten did well, the surgery went great. Dr, Madgy cut an opening in the roof of her mouth, in her palate and was able to clear a big hole out of the bone, about the size of her good side. He had to put in a large stint, that unfortunately doesn't bend well, at which he said will be the cause of most of the discomfort.
He was able to clean out her ears while she was under also,and everything looked good there as well. The whole proceedure lasted around 2 hours and we finally got a room around 8pm. Kirsten slept most the time I was there and woke just before I left. I got to talk to her some before she dosed off again. She complained about her nose and mouth, and said she wanted to play. :)

Ruth will be staying the night with her. She will update this when she gets a chance tomarrow. I thank you for all your prayers.

Matt

Tuesday, July 19, 2005 8:25 AM CDT

Well, today's the big day! We got word yesterday about what time to be there & the instructions. Kirsten wasn't allowed to have ANY food since midnight last night, and today I can give her clear liquids (we got some freeze pops that are okay to use, too!) until 1:30pm. This could be the hardest part for her with not eating! LOL (I wish!) She has a high metabolism and eats so often, but I've got some plans to distract her today (with help from Gramma!)! It's 9:30 and thankfully she's not up yet, but I'm sure will be soon. I was able to get my first good night of pre-surgery rest! It was wonderful! I forced myself out of bed (figured hitting the snooze twice was enough!) at 8:30 just so I could have some quiet time to myself this morning. We have to be at the hospital at 3:00, and the surgery will probably be an hour later.

I've got most of our packing done & ready to go, and even wrapped a few little presents to bring to surprise her with afterwards. I'll let her pick a few buddies (stuffed animals) that she'd like to bring, and a few books, too. So, I'll be back tonight to post the news of how things went! I also have a few other things to keep my mind on today... my new niece/nephew's gender will be determined (as long as he/she cooperates, right, Jenn?!?), and my friend Karen's sister will be getting results to find out if her breast cancer is back to what degree. Lots to pray about!

Love to all! -Ruth

Sunday, July 17, 2005 9:59 AM CDT

Two days to go! I just called the hospital, and thankfully they have some type of computer area there that I'll be able to access. I'll be sure to get to it Tuesday as soon as I can after the surgery (after the immediate cuddling session and she falls asleep, of course!) to update here on how it went. Not looking forward to the cafeteria food (only because it gets expensive!), but oh well! She keeps talking about how she'll get popcicles & seems excited about that part! I don't want to remind her too often about this, only because I don't want her getting nervous about it. She's been playing a lot of doctor & hospital this week though!

Even though we've been trying to stay away from people, I have had chances to just get her out of the home, which has been nice for her. Tomorrow we'll get the call telling us when to be there & when the surgery will take place. It'll be different not having my Mom with me this time (she's come for several of them, and Matt's parents came some, too!), but I'm thankful Matt's job was so gracious with his scheduling so he can be there for this one. I'm just nervous! I can tell by my sudden cravings for all the junk food in the universe! LOL Just trying to stay busy & preoccupied now!

I'll update tomorrow after finding out the time for Tuesday. Today Matt & I are going to an open house for a friend that's home from Iraq for a few weeks. That'll be nice to see him! Then I get to visit with a friend that I haven't seen in about 4-5 years! She's been living out of state, but is here for a wedding... I'm so excited!

I'll be back tomorrow! Love - Ruth

Wednesday, July 13, 2005 10:02 AM CDT

Countdown time now! Six days to go! *gulp* It's funny how I keep waiting for a phone call telling me they need to reschedule it again. I guess I should just be happy that this is IT and we'll finally get this DONE! We're in hibernation mode now. Every time she has surgery, the week prior I pretty much keep her home and away from everyone everywhere! I feel bad for her going stir-crazy, but it's necessary! I'd hate to chance it and have her catch a cold or something that would prevent the surgery from going ahead, or from making her feel a bit worse going into it. We did run a few errands together yesterday, which was nice, but that's it! She's stuck at home now till we go to the hospital next Tuesday! So, I suppose I should be asking for your prayers that she doesn't drive me too crazy, huh?!? :) We won't find out until the day before as to what time her surgery will be. That's when the calls take place, so I'll be sure to update then. I don't know if I'll have access to a computer at the hospital, but I'll be sure to have Matt or someone put an update here later on Tuesday so you all can know how great it went! (I'm thinking positive on this one!)

Well, I get my little break today by going to work! So I'd better get ready! Love to all - Ruth

Tuesday, July 5, 2005 10:22 AM CDT

Two weeks to go! Nerves are coming and going with me, but today (now that the holiday weekend's done!) I'm just concerned about cleaning house. I'd like to have things in order enough so that when I'm gone with her for a few days, I won't have to come home with a sick baby into a messy home, ya know?!? This is when I really need to be implementing those FlyLady habits I've been trying to create! LOL

I cancelled Kirsten's appointment on the 29th with her gastro. That was supposed to be an appointment where they'd insert a little tube in her fanny & inflate/deflate a small balloon, asking her throughout if she can feel & for her to try tightning around it. I called with the concern of how she won't be able to do this awake (they can't sedate for this procedure), and they said that's the only way, and she should be fine. Well, I know my daughter, and after the CT and xray nerves she had, I know she wouldn't be comfortable with this, even with Matt there. I cancelled the appointment (also since it would've been too soon after her surgery...enough for her to endure!), and they said I can set it up in August if I'd like. Today I called a gastro thru St. John's that a few of my nieces go to (thanx, Laura!) and that consult is set for the morning of the 29th this month! :) I just wanna see if there's anything else possible to be done. She continues to have potty issues in her pants, regardless of if I'd leave her in reg. undies all day. Doesn't phase her at all. Only infuriates me, but I'm still wondering if it's related at all to her underdeveloped fanny issues at birth (one of her preemie issues). Gotta pursue this... it's my job! :)

We're still trying to plan Kirsten's birthday party, but one idea we had won't work with scheduling of a few of the guests. This is a BIG day for her, and we really want to celebrate it for her! She can finally have pop and gum and will be FIVE!!! So, back to the boards on this one!

Thanks for all your continued prayer and support with the decisions we've been making in caring for our little Peanut. That means the world to us... mostly to me! :)

Much love - Ruth

P.S. We had a busy weekend, which included going to my niece Leah's graduation party! Here's a picture I found from 11/03 Kirsten with her!
Image hosted by Photobucket.com

Tuesday, June 28, 2005 11:10 PM CDT

I got some pictures from Kirsten's last day of school developed & realized I had a few shots on that roll of her toes! So I put one up on the photo album page for you to see... it shows how they curve in (the middle toe on both feet) and how her left foot's definitely worse than the right.

Today was the original date we had set for her CA surgery. Part of me wishes it wouldn't have been moved, but part of me is finally okay with it. Gives me a chance to keep up on things around the house and such before tackling that event! And I still have to plan out Kirsten's birthday festivities! :) Gotta plan for some fun for her!

Here's some pics of her last day of school, too!
Group shot...
Image hosted by Photobucket.com
With Miss Rebecca... her awesome speech therapist...

Posing with some friends...

And enjoying a cupcake!...

Sunday, June 26, 2005 1:02 AM CDT

Today was definitely a fun-packed day for Kirsten! She went to her cousin Hannah's 5th b-day party & really enjoyed it! It was a kids-only party, and it was an all-out PARTY... princess themed! They got to wear different dresses & boas & jewelry, made jeweled visors to wear, had cake (Laura made an awesome castle one!), and even had a pinata full of candy to break open! Matt picked her up from the party & said she was just BEAMING all the way home! She had sooo much fun! If I get any pictures, I'll be sure to put one up!

Later, Matt stayed home & Kirsten & I went to my nephew Aaron's graduation party. That was nice to be able to see a bunch of family all together like that! Sometimes I forget how much I love our families... and how individually they're so unique & special in their own ways! :) The food was great & there was even a big tent to keep us sheltered from the sudden storms we got hit with! Kirsten was able to play some more with the cousins from the b-day party earlier, and boy! Did she get dirty! Oh, and leave it to my child... she also got her head stuck in some iron bars (a railing leading to the basement door)! Never a dull moment with Peanut!

Matt's at work, Kirsten's been sleeping soundly for a while, and now it's my turn to get some rest! I hope you all do something fun with your families this weekend! Love to all! -Ruth

Friday, June 24, 2005 8:46 AM CDT

Yeah! I was finally able to do it! (Thanks to a tip from Dave H!) I got a new picture of Kirsten up on the photo page! It's one from when she was just 2 weeks old... it amazes me to see how tiny she was! No wonder I nick-named her Peanut! And now she's still so petite, but growing tall & eating all the time & full of energy! I love it!

Today's a low-key day for us here, and I'm happy about it! I might color my hair, we'll probably run to a store or two, but I'll enjoy the relaxing day for sure! Tomorrow Kirsten's got her cousin Hannah's 5th b-day party to go to, which she's getting pretty excited about! Then we have an open house for my nephew Aaron to get to... how fun! It's amazing how all these kids just grow so fast! But it's so cool, too! Being the youngest of 7 kids, I never got to see that in a sibling. I've been enjoying watching my nieces & nephews grow into the people they're becoming! It's so amazing! :)

Time for another cup of coffee! Love to all! -Ruth

Saturday, June 18, 2005 6:49 PM CDT

I've had a little bit to settle down, so now I can post about what's going on! LOL We had a bunch of phone calls back and forth with the hospital this week, some of which were quite confusing, but in the end we finally got some answers and got a new date to plan for her surgery. Tuesday, July 19th, is it! One of the reasons for moving it again is because her doctor will be leaving for vacation about 2 days after when he was gonna do her procedure (next Tuesday, that is). He's just not comfortable leaving so soon after it, just in case of complications or whatever. Considering this is a more extensive surgery, I completely feel at ease with his decision. As much as I'd love to just get it over with so we don't have it interfering with other "life" things, that's okay. Now we know when to aim for again, and this will be it!

Kirsten had her CT yesterday & did her best! Poor girl was an obvious nervous wreck, but they insisted on trying it without sedation, which I mentioned would probably not work! I was right! And with the sedation, it still took about 20 minutes! No way could she have laid still that long! Long story short, it's over with and they got the images the doctor needs.

Thanks for the prayers & we'll keep you updated! Love to all, the tired Mommy Ruth! (and the energetic Llama Kirsten!) :)

Monday, June 13, 2005 9:43 AM CDT

Aaaaghhhh! Panic attack time! I just got a call from the hospital & they need to bump up Kirsten's surgery to NEXT Tuesday (21st)! I'm not ready for that!!! I called work & my boss said that'd be okay to move my schedule around. But Matt's work was so kind to work around it & I don't know if they can reschedule things for him as well on such short notice!!! Aaaaaghhhh!!! LOL (Take a deep breath, Ruth!) Okay, if I can just stop shaking for a moment here! LOL They said if we can't do next week, it'll have to be later in July, which we do NOT want. I don't want this to interfere with Kirsten's 5th birthday... she's been looking forward to this milestone for quite some time! (She's been waiting till she turns 5 to be able to have pop or gum!) So... I'll update when I know more! Please just pray it can work with Matt's schedule!!! Thanks!

Thursday, June 9, 2005 11:21 PM CDT

Got some good news today! I spoke with Kirsten's teacher and she told me that Kirsten was accepted into the DK (Developmental Kindergarten) class for this coming fall! I also spoke with someone at her ENT's office and found out the CT is scheduled for a week from Friday (the 17th)! That's great, because she won't have to miss school (her last day's on the 16th) and I won't have to miss work (I'm off on Fridays)!

I have a new photo to put up on the album page, but am having difficulty loading it up where it's a normal size! When I'm trying, it's coming out HUGE! LOL Guess I'll keep trying! :)

Tuesday, June 7, 2005 11:35 AM CDT

Well, to my surprise the ENT's office called me back yesterday & said the doctor's writing the rx for the CT! They'll call to get it scheduled so we can have it done before her surgery! Huh! I kind of wonder what if I didn't mention this, but I still feel confident in the doctor's abilities, so that's good!

I'm getting ready to head out of town (Cedar Point trip with work!) & packing up a few of Kirsten's things. She's excited to be staying the night with her cousin Sami & then playing with other friends (Brendan & Shawnie) tomorrow! She'll miss a day of school, but it's okay! She'll be having fun!

I'll post back when I hear of the CT appointment. I just hope it won't interfere with other appointments we have set up already. We'd been without insurance for like 7 months, so I have them all lined up now that we do have it! Then again, there's still school for Kirsten & work for me... just wish I would've found that note earlier to pursue this sooner! Oh well! At least it's getting done! :)

Sunday, June 5, 2005 7:13 PM CDT

I had to leave a message last week for the ENT to call me back, so I'm hoping that will be tomorrow. I have to ask if he wanted Kirsten to have a CT or not. (In my last post I explain why.) I'm starting to get a few things together to bring to the hospital for her to do. Matt's already got his schedule worked out great for that week, so that's one less thing I'll be thinking about! Her last day of school is the 16th, so I'll be putting her in "hibernation" mode not long after that! (I keep her away from people so she doesn't catch anything before surgery!)

This past Friday Kirsten was supposed to have a procedure done with her gastroenterologist. We had to cancel it because Matt had to work, so it's been rescheduled for the end of July. What they planned to do was insert a small catheter into her fanny while she's awake, then inflate a small balloon & ask her if she can feel it or to try to tighten around it. We're trying to figure if her potty problems are due to her being lazy & sidetracked or if there's really a medical concern (which could be, since she had development problems down there). Fortunately, she's been doing better with the potty! Today she was wearing big girl underwear & no accidents! Even ran to the potty a few times on her own with diarrhea!!! For her, that's GREAT! We celebrate even the little things around here! :)

Sunday, May 29, 2005 9:49 AM CDT

Had some frozen veggies on my eyes (Mom's trick!)& now I can see well enough to put a new journal entry up here! Why all the crying? Oh, just an awesome church service last night & I don't think there was a dry eye in the place! The service was about honoring heros & learning how we can have the heart of a hero (by committing completely to something & letting God use us ordinary folks to do something extraordinary!). They played a video of an interview with 2 soldiers from Kensington that served in Iraq, Tony Sadler & Brian Fisher. It was so awesome to hear how God placed those 2 men in the same area & led them to find one another there. The comfort of knowing you're with a brother in Christ, let alone that you're both from the same place back home... I can only imagine how amazing that must've been for them. They shared about a time when Brian was able to protect Tony from a car bomb, and even more - how God placed His protection on them both during that moment. Tony wasn't able to be at the service, but Brian was sitting a few seats away from me. Brian is kind of an extended family member (my sister Val's husband Dave's brother!), and I'd been following stories of him through the family & praying for him for a while. This also reminded me of my good friend Karen's husband Doug that's currently over in Iraq. Another aspect of a hero's heart is that they know it's not about them. These men were/are serving for US, putting their lives on the line for US... for ME. That brings it all home.

As far as any updates here relating to Kirsten, I found an old email last night that I had written after her last failed procedure in October of last year. I had written how surprised her ENT was about how much new bone growth there had been, and how he mentioned wanting her to have a CT (CATscan) since the only one she had was when she was about 5 months old. I guess I'd better call him back this week to ask if this is still something he wants done before her surgery next month, so we can line it up if it's the case!

Pray for our troops. This weekend, pray for them and for our government... our President and leaders and the decisions they have to make. Pray for protection and guidance and discernment. Pray for the wives & husbands & children & parents & other loved ones here at home that are trying to continue their lives as normal as they can during this time. Pray. And thank anyone you get a chance to for the sacrifices they've made for us... for you!

Monday, May 23, 2005 11:16 PM CDT

Talked to one of the nurses today & she said she spoke with the doctor regarding my concerns with Kirsten's toes. She said he will not do surgery on them now. He recommends we return if, and only if, they begin to hurt her in the future. She should avoid shoes with pointy toes and high heels as she grows, sticking to ones with a more broad area for the toes. (I'll try to get someone to take a picture on their digital camera so I can show you all what they look like!)

I'm still a bit discouraged now, only because of not wanting to deal with another procedure in the future. It'd be nice to just have it over & done with, for all of us.

Friday, May 20, 2005 2:22 PM CDT

Well, a little torn here! Matt & I were talking the past few days about Wednesday's results. We're considering pursuing her getting her toes fixed now, only because it'll have to be done eventually. If it's a minor procedure (just snipping a tendon), then maybe it'd be a good idea for us to go ahead with it now. If it's more serious, like with a pin put in, then we'll wait. Our thinking (and from asking lots of opinions from others!) is that in a few years she'll start getting self-conscious about how her toes look, and if we took care of that now, she wouldn't have the issue in the future. So... put a call in & have to wait for a return call on Monday. We shall see!

Wednesday, May 18, 2005 6:11 PM CDT

Frustrating day, but good results! She was freaking out about getting her feet x-rayed, which bugged me since she just had an x-ray of her belly less than a month ago! For some reason it was just so traumatic for her today, which made a quick task much longer. The doctor was great, and at least Kirsten cooperated well with him and his assistant. He said he doesn't recommend surgery on her toes for now! So different from the Beaumont doctor who said we should! This doctor's reasoning was that it isn't causing any trouble for her right now. I guess kind of like one of my friends told me... if it's not broke, don't fix it! :) He said as she gets older we can talk to him about it then. Matt figures she'll get self-conscious of them later on & we can deal with it at that time. (He mentioned snipping a tendon & possibly putting a rod/pin in, but I kinda was just focused on the "no need for surgery" comment!)

One interesting thing was the doctor asked who else in the family has toes like this! So... any of our relatives reading this, let me know if you have any toes that curve in! "Overlapping" is all the doctor called it, and he said it's highly hereditary! Mostly in girls. But he said if she starts wearing the pointy-toed stilettos, she'll be having pain then! :) (He was funny, which helped!)

We were there much longer than expected, the day was thrown off-schedule, but I'm quite happy with the results! Now we just have one thing to focus on, which I suppose is enough in itself! :)

Thanks for the prayers for today! I'll update more next week... unless something comes up before! xoxo - Ruth

P.S. She has a bit of bruising around her knee from the bed incident from last night, but she's so proud that she was able to help Daddy pull her leg out! She's a self-proclaimed Supergirl!

Tuesday, May 17, 2005 11:06 PM CDT

I'm getting anxious about tomorrow's appointment at Children's with the orthopaedic doctor. I think I'm nervous that it won't work out for him to be able to coordinate the surgeries together. I know, I just need to take a deep breath & relax & realize God is in control of this whole situation! I'll do what I can & I just have to trust in Him for the rest!

I think my nerves were a bit compounded tonight when Kirsten got herself stuck in her bed. Well, at least I'm thankful she never got her head stuck in her crib bars! This was her leg stuck in the bed's siderails, and it was a bit of a struggle to get her unstuck. We were about to try to saw/cut one of the bars (it's plastic), but weren't sure what we even had that could do it. Thankfully it all worked out (meaning she finally calmed down enough... after vomiting on us, too, of course! ... to help us)& she's sleeping peacefully now, in OUR bed. Just seeing the look of panic on her face got me thinking about how she'll look when she comes out of surgery. There's always that look of panic... the look that just breaks my heart!

Oh, I called her ENT with a few additional questions, but he's not going to be in the office until next Monday. Guess I'll just wait for his call then!

Time for some sleep... got a busy day ahead of us tomorrow! Thanks for all your prayers and support!
Love ~ Ruth

Friday, May 13, 2005 10:11 PM CDT

This past Monday we had our visit with Dr. Madgy (Kirsten's ENT) to talk about surgery. I was so relieved that Matt was able to come to this appointment so he could see first-hand what the plan would be. Of course, there were a few questions I just didn't think to ask, but I'm comfortable enough to call back if I feel they need answering before the surgery date. We're trying to coordinate some work to be done on her toes while she's out for this procedure, and we shared our concerns with Dr. Madgy about trying to see a Children's Hospital doctor soon. He took some info from me, and the next day I got a call from the head of the orthopaedic dept. to set up an appointment with him... next week! Woo-hoo! This just might all work out!

Unless things change with the other doctor, Kirsten's surgery is set for Tuesday, June 28th. I'll be sure to update along the way, too!

Love ~ Ruth

P.S. One thing I did remember to mention was that we were wondering if this could be done at Beaumont instead (knowing the doctor she had been seeing about her toes works thru there, and it's much closer to home!). Dr. Madgy told us he doesn't want to attempt this surgery there... his team and everything's at Children's, and this is a more extensive procedure in which he needs the best surroundings possible! So glad he told me that... I feel even better about going thru Children's again!

Click here to go back to the main page.

----End of History----