Wednesday, December 16, 2009

Graduation Day!!!

Tomorrow, Noah will receive his diploma for completion of the 8 week intensive feeding program! They had a graduation party for him today, complete with cap and gown! Pictures soon! What a bittersweet time it is to be packing for home! We are so unbelievably ready to get home and back to our "normal" lives, but we are going to miss everyone here to much! The therapists and Dr Clawson have given so much of their time, dedication and love to Noah. What a truly gifted group of people and we so grateful for the work they have done with him! They have made this time go by so fast and they feel like family to us now.
Noah will be leaving the clinic eating over 25% of his daily caloric needs, as well as major improvement in his oral strength and muscle tone. We have pretty well confirmed an allergy to milk casein (after a reaction to straight cow's milk last weekend), so we will continue to avoid milk and follow up with allergy testing at home. I think we have been able to manage his high stomach acidity and still look forward to seeing a GI specialist in the near future. His retching continues to be a major issue, but we have been able to slowly move forward with volume in the last week. We are transitioning to pureed table foods of different varieties and he is still accepting over 2oz of formula from a squeeze bottle. His speech and language continues to improve each day. I can't tell you how happy I am to be writing all of the above, when I think where he was just 8 weeks ago, eating virtually nothing by mouth, 100% tube dependant, underweight, chronic diaper issues, skin issues, ranking a 0 in almost every area of muscle tone and strength in his face and mouth, and a vocabulary of only 25 words. I know a lot of work remains, but we have a huge start in the right direction!
There have been so many people "behind the scenes" that have done so much for us to make these two months a possibility. It has been a huge family commitment for us to be here. Our parents have been amazing and have never left us in need of anything. Brian and I are so very blessed to have their unconditional support. Even when things didn't work out for Elliot to stay here, they never hesitated to step up and agree to keep him. Elliot and Zane have hardly even noticed that I was gone! From the weekly care packages to phone calls and emails, we have once again been showered with love! And, as if I didn't already know this, I have once again been reminded of what an amazing husband I have. Brian has been relentless in his ability to keep things going at home, take care of the boys, and keep me emotionally buoyed this whole time, and still work full time and make weekend trips to Evansville. He never faulted and kept a great attitude 100% of the time. I don't know how I got so lucky, I have the best husband in the world. I never even got one call that the house was on fire or that the cops had to break up a wild party...:) Which is more than I can say for here, when it comes to fire at least!
We are officially "outta here" tomorrow afternoon! We hope to be home late tomorrow night!!
Thank you for faithfully checking in on us and as always for your continued prayers!

Thursday, December 10, 2009

Wrapping up week 7!

I can't believe it's almost over! One more week left to go! Looking back at our first week here, it is overwhelming to think how far he has come. We have learned so much and even though we still leave with lots of questions, he has made incredible progress. I can truly appreciate how difficult and involved feeding issues really are. I can't stress enough how blessed we are to have found the team at St Mary's. What we've learned here, coupled with the partnership of our therapists back home gives me so much hope that we are moving in the right direction, even if the steps are small.
Noah has been taking slightly bigger volumes of food this week, and they have introduced a few table foods in their whole form for his crunching and chewing exercises. Much like I would not throw a hunk of steak on Elliot's tray and expect him to know what to do with it, Noah has to learn the same. His food will be pureed for quite some time until he fully develops the skills needed for proper chewing, tongue movement, and swallowing. The only way to learn that though, is to practice. We are actually holding the food in his teeth and cuing him to crunch and chew. It's not always pretty, trust me, he does not like it, but he's getting better. We will slowly advance to gritty purees and thicker textures, but it will be awhile. I am excited that my "baby food making" obsession will be put to good use again! I love making Elliot's food! We have been encouraged to make Noah's meal times separate from our own so that he is able to concentrate without the chaos of typical meal times. We will continue to put him in his chair with a timer and he can not get up while we eat and if he expresses interest in our food, that's fine, but it will not be required of him just yet. I know Zane will be frustrated that a different set of rules applies to Noah for right now. Eventually, Noah's eating will be integrated into our mealtimes, just not right away.
I was questioning a lot of behavioral issues today regarding anxiety vs. 2 year old fits and how to handle certain situations. (seriously, when will I have a behaviour psychologist at my disposal again?) There are many times that you can tell Noah is terrified and other times that he's just being a toddler. Noah loves the therapists at the clinic as well as the other staff at the hospital, but many of them, it has taken the better part of 8 weeks for him to warm up to. Dr Clawson said that Noah kind of missed out on that part of his infancy where he learned to self soothe and with all the Dr's, test, surgeries, procedures, etc, he is so highly sensitive to people and his environment. We were having this discussion as we were leaving the clinic, and as if on command, Noah launched into a fit because he wanted me to carry him out and I told him "no". It was awesome, he threw himself down on the floor, kicking and screaming at the top of his lungs. What a perfect time for a teaching moment...I waited at the front doors while he pitched himself around on the floor in the hall. Dr Clawson just sat down next to him and waited it. Man o' man did we get some looks from people passing by. It was a beautifully orchestrated meltdown. In the end, after 20min, we won, and he walked to the car. Obviously, this was not one of those anxiety occasions we have been talking about, this was sheer 2-year-old will, that is freakishly strong!

Saturday, December 5, 2009

More questions than answers...

We've had such a busy week! Laura, Noah's OT from home, as well as other friend Laura (also and OT), came down last Wed night and observed a session on Thursday. Miss Laura did one of the feeding sessions so that Noah would be used to that routine when she saw him at home and he did great with it! Thanks again for coming guys!
Brian and Elliot came down Thursday evening and hung out at the clinic with us on Friday morning. We scheduled Noah's upper GI, swallow study, and small bowel follow through for Friday afternoon. I was so nervous, yet hopeful, that we would finally discover the reason for some of his issues. I was so proud of him, he did AWESOME for the test! Both the good and bad news of the situation, was that the tests were "normal". "Normal" meaning that his anatomy is different due to his CDH, but nothing pointed to why he is only able to tolerate such a small volume in his tummy. While I was so relieved to not see something wrong with him, it was very depressing to walk away with no answers. I seem to deal so much better with problem/solution, than "this is just the way he is". We have always been told that the anatomy of his stomach is different due to developing upside down in his chest, but I guess we always wanted to presume that, other than reflux, it would function properly. We have been trying to stretch his stomach for weeks now and keep running into the same issue. Dr Clawson said that if we continue to push the volume past his limits, he will eventually begin to associate meal times with retching and pain. For now we will continue to feed him up to his limit while we work on "plan B". "Plan B" is getting to work on finding a good pediatric GI doc that specializes in motility issues as well as chronic abdominal pain and retching issues. Dr Clawson highly recommends a Dr in New Orleans. Trust me, traveling to New Orleans isn't high on my list of ease and convenience, but we are soooo tired of trial and error at this point, I am just ready to have him comfortable and feeling well. He is doing so well with his eating at this point and everyone agrees that the sky will be the limit, if only we can find a solution to his GI issues. Dr Clawson is going to try and contact this Dr directly for his advice and opinion. As far as his metabolic workup, we still don't know 100%. We did get the blood work back and there was nothing that jumped off the page at us as far as his swelling and maple syrup smell. The inital urine came back with some protein and high PH, but we have yet to hear results on the amino acids. I really don't expect any surprises and feel strongly that this will all come back normal.
Noah is still eating 1oz of baby food and drinking 2oz of formula per session. This is still right around 25% of his total daily caloric needs. We are working on introducing a variety of foods and hope to move away from the baby food and over to thin puree of table food in the near future.
I am so so ready to be home! Overall, these past 7 weeks have gone by so fast, but as we are nearing the end I am really starting to feel the strain of being away. I am so ready to have all of my family under one roof again! I know that his schedule of eating and therapy will be crazy, but I am ready to get started!

Tuesday, December 1, 2009

Bad bad blogger...

Whoops, didn't realize it had been a week since my last post!
We had a great weekend home and a very blessed Thanksgiving! Another year of so many things to be thankful for! It was great to be with my boys for 4 days! It is so hard to be away from them!
We still have not received any answers as to Noah's strange maple syrup odor from last week. We haven't noticed it in the past few days. Hopefully we can get some results this week sometime.
As far as feeding progress, he is not really progressing, not regressing, but just sort of maintaining at this point. We are working on staying as consistent as possible with the 3oz of combined food and formula per session and he continues to have episodes of retching during most of them. The upper GI has been ordered and we are waiting to be scheduled. Off the top of my head, I think he is taking just under 25% of his daily needs by mouth, leaving him 75% tube dependant. A far cry from where we were when we started. They were hoping to have us leave with 50%, but it's obvious, with whatever stomach issues he has going on, we aren't going to get there quite yet.
Noah's therapists from Ft Wayne are driving all the way to Evansville tomorrow for a visit! Isn't that amazing! He is one lucky little boy to have therapists that are so committed to his success! This will be great for them to see and participate in his therapy sessions first hand so we can start building our plan for home.
Thanks for checking in on us!