Sick of being sick!

We have been battling illness around here for months! Noah has been on 6 different antibiotics since the end of July! This is crazy! He has had back to back ear infections and respiratory issues off and on. Of course our last visit to the pedi led us to an ENT consult, which you may have guessed, is leading us to tubes. As of now, Noah is schedule for tubes and another ABR on Oct 22nd. This should be a very simple, easy, outpatient procedure for him and we will know once and for all, the extent of his hearing loss with the results of the ABR. In the middle of all this, Noah's g-j tube came out and we replaced it with a g-tube and he has been doing so well with it that we are not going to schedule for a g-j replacement. He is tolerating his overnight feeds and small boluses during the day. He is still eating great, of course, it's just not enough to sustain him. Weight is a constant issue, even with the feeding tube. BUT the important thing is that he is mastering the skills of chewing, eating, swallowing, texture, etc, etc, it's still volume and pain that holds him back.
Following in his brother's footsteps, Elliot has also been sick. He had a bad case of bronchiolitis that landed him with breathing tx and meds along with several ear infections, which is also leading him to tubes...blech. I am just hoping they will both be healthier when these are done. We are still waiting for a consult with ENT for Elliot before anything is scheduled.
We will be celebrating Zane's 11th birthday tomorrow!! He is so excited! The ole cliche, "Where does the time go?"....I can't believe it! I am so proud of him! He is growing up to be a young man still my baby boy!

Preschool

All summer we have been pumping Noah for school. We have read books, visited the school, shopped for supplies, and talked about it every night before bed, in preparation for the big day. In his IEP, they really wanted him to work up to riding the bus to and from school every day and work up to going 4 days a week from 8-11. We live walking distance from the school, and the ride there and home is less than 2 min, but they felt that it was going to be such an integral part of this whole experience for him to have the separation at home and the independence of doing this on his own. Anxiety is HUGE for Noah, especially with separation in situation that he does not feel 100% safe and in control. Even after weeks and weeks of feeding therapy, he still would never go to the treatment rooms w/o me even though he was totally confidant of what would happen in there. So, I spent weeks agonizing over this, thinking sure I would be taking him and dropping him off for weeks, if not months, until he worked his way up to wanting to ride the bus. My stomach was in knots thinking about how scared he would be and second guessing if it was right to put him through this. I was sure that I would be called daily because he needed to come home because he couldn't be consoled....
Then the big day was upon us...



The actual putting him on the bus part was quite ugly. Brian and I were an absolute wreck after doing it. I felt HORRIBLE...until about 5 min later when we got a call from his teacher saying he was at school safe and sound and was smiling? What?? Noah? Not only did he stay the entire day, but he has stayed every day since then(minus some sick days). I have never had to take him or come pick him up early. He LOVES the bus and school! We can't believe how well the transition has gone! We are so so proud of him!!

5th Grade!!!!

Seriously??


5th grade already? Last year of elementary school?



Don't you love the evil glare he's giving me because I told him I wanted a picture of him getting on the bus??



Don't worry, I promise I didn't follow him out...I took this picture from inside. I was also informed that I was not aloud to scan his baby pictures to be included into the post......sigh...fine.
Seriously though, I remember his first day of preschool and now he's in 5th grade...I remember the days he used to watch Woody Backpacker (Woody woodpecker) and when he would ask me to play in the Uncle Peter room (the computer room, ironically enough he does not have an Uncle Peter)....his favorite Sesame Street video (that happened to be in Spanish, I can still remember some of the songs!)....his blankie...his 3'tall Spiderman doll that he used to hide in the shower to scare me....his fist Halloween costume..(tigger, then Elmo, but my all-time favorite, the MiMi-made Buzz Lightyear..)...the first time I held him after 24 hours of labor and a c-section...(my babies like to be difficult)
OKAY I NEED TO STOP!!! sniffle, sniffle....it just happens so fast, right before your eyes! I'm so darn proud of him!

Home!

We've actually been home since last week, but I haven't really had much time to update the blog. We decided to pack it up and come home a little early because Noah wasn't feeling any better. He was having major pain in his groin area that we thought may have been a UTI since is was most concentrated in the morning and throughout the night (when he's hooked up to tube feeds). We did an urinalysis and culture in Evansville, but everything came back negative for infection. He has been on an antibiotic for weeks, so I am sure if there was infection it was masked by that. We got him into the pediatrician when we got home and his ear infections were raging once again and they found a swollen lymph node in his groin on the side where his g-j tube goes. His tube is going bad anyway, so it was on the list of things to be scheduled. The Dr is wondering if there is irritation from the g-j causing him this pain. We are scheduled to go to U of M for a consult next week. They will look at the tube and decide how to address the chronic tube infections (he has had several over the past year) and swollen lymph node and schedule a new tube placement. He seems to be feeling better, but the pain still comes and goes. In Evansville he wouldn't even walk or stand on his own due to pain, but he's definatly no where near that now. The ear infection is puzzling as well, he never complains that they bother him, and the Dr is wondering how many he has actually had, but we just didn't know it. We will follow up with him in a week and if it's still not clear, he will send us to the ENT.
As far as eating, he's really done pretty good since we got back. He still won't willingly eat if you set a plate down in front of him, but in the theraputic style mealtime, he is still getting in his 2oz of food and 2oz of liquid. He starts preschool on Monday so we are trying to push mealtimes around so we can still get in 4 a day and try to avoid any tube feedings while he is at school. I am just hoping we can get these ear and tube infections under control with minimal trips to the Dr as possible so he can just focus on school and being 3! This is going to be a great year for him!!

Week 2...

Hard to believe that we are at the end of week 2! This has been a frustrating week...Noah got sick on Sunday and it almost immediately went to his lungs. Poor guy has been coughing and wheezing non-stop. Round the clock breathing treatments and steroids for him! After still not getting any relief, they got us into the after hours clinic to discover that he has two pretty significant ear infections. They went ahead and started him on another antibiotic. The next day he was back into the Dr for a possible UTI. He is having lots of abdominal pain and what appears to be painful urination. They did a quick xray to check his bowel and all looked well. He is already on the antibiotic, so we are waiting for him to improve!
As for feeding changes...now that we know that 4 oz per meal is Noah's limit, they have really been trying to boost his food as much as possible to get as many calories into each meal. This backfired and he started to retain a lot of fluid and all but stopped peeing. At home, we boosted with things like tahini, oils, peanut butter, cream cheese, etc, so they have stopped boosting with formula and gone back to the those for now. He has lost quite a bit of weight and they have suggested we go back to bolus feeding along with his meals during the day. I am hoping that over the weekend he will start to feel alot better and hopefully start to pee off some of this extra fluid. When we go home after next week, we will still attempt to give him both spoonable and chewable foods with each meal, it's just going to be a wicked circle of weight gain and calorie balance. The chewable foods are really just for practice and most of his calories will come still come from the spoonable foods, but not necessariy the texture of a puree.
Since Noah loves to share, he was happy to share his germs with his little brother, sending him to the Dr this week as well. Same respiratory stuff along with allergies. Thank you Grandma B for taking him to the Dr! Since Noah and I are coming home next week, I think we are just going to stay down here for the weekend. It's such a long drive and with both kids not feeling well, I don't think either one would do well in the car! Zane seems to be healthy and is having a great time with MiMi and Pappy right now! I am so extremely ready for us all to be under the same roof again! I don't know why, but this trip seems to be longer than the 8week clinic we did last year!
Despite all the sickness and germs, we were able to get out and have some fun this week. The Vanderburgh county 4-h fair was going on so we went out to see the tractor pull with some of the therapists from clinic and their familes. Noah LOVES tractors, so was in hog heaven (no pun intented, there were actual hogs there too:). After so many days of tears, it was great to see a smile on his face again!
Not sure what next week will bring, I would imagine if he doesn't feel any better, we will pack up and come home early. Time will tell!

Feeding clinic update...

We had a great weekend with all of the boys. Brian and Elliot came down on Friday and left, along with Zane, this afternoon....:( We were able to get out and about alot this weekend I think the boys all had a great time. I just hate it when they go!
I met with Dr Clawson on Friday and we talked alot about what they have been seeing and thinking since he has been there. She noticed a big difference in the fact that he does actually WANT to eat. He no longer needs the positive reinforcement between bites and never refuses. His main issues are endurance, volume, and his ever-present gut pain. He can only comfortably eat 4 oz before the pain starts, but again, this is a small improvement from last year. He gets soooo tired while chewing that he will actually fall asleep. They also think his small lung reserve has a lot to do with this. I have never actually thought about how much this would affect him from a feeding aspect. She said many CDH'ers struggle with this. Noah is just going to need lots of time and practice. She agreed that it was very unfortunate that Dr Hyman's approach in New Orleans didn't have more of a positive outcome, but she does agree that the g-j tube is best for him, for now. It will be a long time off before he is ready for a tube feed wean. There are only so many calories that you can fit into a 4oz meal. He still has the edema issues when he consumes the higher calorie formulas or juices, but they are experimenting with some different things for supplementation. We are going through his pallet of foods to find the ones that he does the best with as far as chewing and eliminating those that he just isn't ready for. We are hoping to go home on meals that consist of 2 soft chewable foods and one puree along with a drink. The more he works, the more weight he is losing, so we are trying to consider that as well and keep an eye on the weight gain. We will continue to do his chewing and facial exercises before each meal.
We have met some fantastic people both here at the RMD house as well as the feeding clinic. I was talking with a woman that was serving breakfast here this morning at the house, only to discover she also had a little boy born with a CDH and he and Noah are only a week apart in age! We are going to try to get our boys together one day this week.
Thanks for checking in on Noah and I hope you had a great weekend!!

Evansville feeding clinic take 2!

We are so very blessed and lucky to be back at feeding clinic for another 3 weeks! This was always kind of in the plans when we left last year, but we just weren't sure when it would happen. We are only a few days into it right now, but so far he has fallen right back into the routine. He remembered all the therapists and we've only had a few meltdowns heading to the treatments rooms. He is still retching at small volumes, even with the medications, and 4oz seems to be his comfort zone. I remember when it was only 2oz though, so there is some improvement from last year. He is still about 85% dependant on tube feeds. I think this go round we are really hoping to work on texture grading and endurance with chewing skills. Since volume is such and issue and we have learned the hard way that pushing him to fast too soon is not the way to go. It would just be great to see him eating some more age appropriate foods without tiring so quickly. Today he ate part of a waffle during one of his meals that was cut up very fine and his OT made sure every bite was properly chewed. In between bites of waffle he was fed yogurt for a break from chewing. He retched just over the 4oz mark and was so fatigued from chewing he actually fell asleep afterwards - at 9am! It just takes so much out of him! It is going to be a slow, slow process, but when we look at where he was last year, it really is amazing! They have said it is still clearly obvious that he has pain when he eats, but I do think the Neurontin has helped some with that. It was a little discouraging to see that he has only gained 1 lb from last year, but we did find out that he is now in the 50th percentile for height!
Since we are here in the summer, Zane was able to come with us this time and I have loved having him here. Elliot is home with Daddy and getting lots of love from his Grandma's during the day. We are, once again, so very thankful for their help!! The RMD house opened in January, so we are so blessed to be able to stay here this time. It is BEAUTIFUL!!! It's pretty small, only 10 rooms, but everything is brand new and it's within walking distance from the hospital! Oh and of course we don't do anything without drama, Noah was able to make his presence known the first day when he got his hand stuck in the elevator door as it was opening. Right as the words, "please don't do that" were coming out of my mouth, the door opened and his hand slid right in. The door wouldn't open or shut because his fingers slid right in. It took a few people to "unstick" him, but other than a little emotional trauma, he was not hurt.
Thanks for checking in on us and I hope you are all having a great summer! We will update again soon!