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!

I blame it on the kids...

for my blog slacking!! Sorry that we have been so out of touch! We are still here, doing great, just soakin' up the summer. We've been busy with vacations, the lake, and all the other great stuff that comes along with decent weather!!
Noah and I are actually getting ready to head to Evansville for 3 weeks of intensive feeding therapy. I PROMISE to put up a decent update when we get there next week!! Pictures too!!!

Let's say that things haven't exactly gone according to plan, the New Orleans plan that is. As I mentioned in my previous post, about a week into the trial, Noah started having major retching and this continued for over 3 weeks. He lost a lot of weight and wasn't tolerating any of his tube feeds. I was communicating with Dr. Hyman throughout this ordeal and he became very skeptical that this was NOT from a virus and was more inclined to think that Noah is not a candidate for his trial after all. He stated to me that Noah was the first in 50 trials to have a poor reaction. He was insistant upon the fact that Noah should no longer be retching and should be able to tolerate much higher rates of feedings now that he was desensitized and on the medications. His last correspondence with me was to say that he thinks there might be something else wrong with Noah that he is not seeing, and it is too difficult to diagnose via email. His only suggestion was to add more pain meds to the ones he is currently on, one being lydicane, that would have to be administered in the hospital for safety. This is NOT something we were willing to do. He stated since we are not in the New Orleans area (or remotely close for that matter) that he wants to call off the trial and put the ball back into our local medical teams court. We were heartbroken, that he put an end to things so quickly and strongly felt that he simply gave up on him too soon. Brian and I spent the last weekend doing alot of talking and reviewing all of the things Noah has been through and tried in terms of feeding. The first thing we both agreed on, is that Noah's behavior has been out of control since we started this. His anxiety and meltdowns have been at an all time high. I think not feeling well, having significantly less nutrition, no structured mealtimes, and adjusting to new medications have all played a role in this change. The feeding team in Evansville and his OT here in town have been AMAZING at helping us troubleshoot. Dr Clawson wants to stick as closely to the Dr Hyman's protocol as we can, but within limits that Noah can handle. We have been able to work him up to his regular (pre-New Orleans) feeding rate at night (still through the J) and we have brought back 2 structured meal times during the day. He is currently getting about 75% of his nutrition through the tube and 25% orally. He is still retching with larger volume meals, usually anything over 4oz. We have discontinued the Amitryptaline but are going to continue on the Neurontin for the time being. He has had some very good days and some very bad days. He still tires very easily when eating or chewing anything more than smooth purees and tends to swallow things whole. We are still working on strengthening his jaw and facial muscles. I think we have just accepted the fact that this is going to take a long time, and that there is no easy button or magic pill that is going to take this all away. I am so very blessed to have some amazing CDH support families to share ideas, suggestions, and advice with. We are all going, or have gone, down the long and winding feeding road. As one mom recently pointed out to me, CDH kids have such complex issues, it's almost impossible to pin it down to just one thing. For now, we are sticking with what we know works for Noah and are accepting of the fact that it's going to take lots of time as well as practice, to overcome these feeding complications. I remind myself that not quite a year ago, he was almost 100% tube fed. We've learned to celebrate all the victories, not matter how big or small!