Where did the time go?

Holy smokes have I let the blog go by the wayside! I promise that I always have the best of intentions, however, thinking and doing are apparently two different things..
ANYWAY...
All is well with the Bakers, the boys had a spooktacular (bad joke) Halloween and I am sure there is enough candy around here to fuel a small army at least. Noah came up with his costume idea all on his own and Elliot wore an old hand-me-down Elmo costume of Zane's, the original owner. Zane went back and forth and finally settled on Davy Crockett.
We've had LOTS of illnesses, too many to count and both Noah and Elliot have had tubes in their ears over the course of the last few weeks. Both recovered beautifully and neither have been ill since **knocking on wood**. Elliot will actually be making another trip to the OR this coming week for an inguinal hernia repair. Poor guy is following in his brother footsteps. Noah had the same procedure done last year. I am hoping **again with the wood knocking** that this is it for awhile at least and we can get through the rest of the winter without any major illness and surgery.
Both Zane and Noah are having a great school year. Noah continues to thrive and we are seeing big changes in him! I love it!
We have made some changes in Noah's tube feeding and for the first week we saw huge advances in his oral intake. We didn't change his calories at all, just the time in which he was getting it. He's not doing quite as well as he was in the beginning, but it's still better than before we made the switch. All in due time I suppose!
I will try to get some Halloween pics up this weekend!!

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!

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!

Rough Week

So, our first official day of the protocol was last Saturday. We were able to successfully feed Noah through the J-tube at a rate of 85 for the first several days and he was tolerating the meds great. We also started the Miralax for the stool impaction as well. After a few days we had to stop the Miralax as things began moving a little too quickly! Come Thursday, he began retching during the day for unknown reasons but was happy and playful. Thursday night things got worse, he began retching so severely, I wasn't able to run any feeds whatsoever. Friday things continued downward and we took him in for an x-ray to check the placement of the g-j and the location/size of the stool impaction. The x-ray confirmed the correct placement of the tube AND that stool impaction was gone! Good news! However, doesn't really explain the intolerance of his feeds. Despite the protocol instructions of nothing in the stomach, we began to run very low rates of pedialyte and calories through the g-tube and small boluses during the day as well. He still continued retching with everything that went in. We have been communicating with the Dr from New Orleans as well as his pedi and feeding team of what exactly was going on. We are just hoping this is a virus of some sort that needs to run its course and we are trying to keep him hydrated anyway we can in effort to keep him out of the hospital. Last night we were able to run a very low rate (25) through the j-tube and for the first night since Thursday, he slept peacefully. This morning, by huge surprise, he sat and ate a handful of grapes willingly on his own and then proceeded to ask for salad and chicken nuggets at lunch time! Granted, he didn't really actually eat that, but he actually ASKED me for it! We are still keeping our fingers crossed that he just has an intestinal virus and that it will pass that it's not something else brewing, or a reaction to his new meds. I am hoping he is feeling better in the next few days!
I will post more of an update on the rest of boys and pictures soon!

Back from New Orleans!

Whew...what a week! Glad to be home!! I can't tell you how excited we are about the news that we received this week.
Tuesday - Noah LOVED the airplane! He did better than we could have ever expected on the flights. Especially when our first flight was late resulting in us missing our connection in Detroit. Thankfully, they were able to get us on another flight the same day, but we didn't end up getting to New Orleans until almost 10:30pm! The people at the Ronald McDonald house were absolutely incredible. Some of the most kind, caring, hospitable people we have ever met! Not only did they wait for us and held our room, but greeted us at the door with a new toy and Hot Wheels slippers for Noah.
Wednesday - We arrived at Children's Hospital at 7am to begin the esophageal manomatry. They put Noah under general anesthesia and removed his g-tube and inserted the manometry catheter in it's place. It went as far as the beginning of the small intestine. They also placed a tube into his nose that went down through the esophagus. While he was still sedated, they completed the motility study. The results - normal esophageal motility! They removed the tube from his nose and left the other cath in place in his gastronomy site. This caused him no pain or discomfort. After this, he was admitted into the hospital and we just went back to his room for the rest of the night. Dr Hyman let us in the room during the study and explained everything to us. Later he spent over an hour in his room with us just letting me pick his brain and ask a million questions. He is a wonderfully brilliant and kind man! One of the most interesting things we learned is that he was currently treating 2 CDH babies in the NICU with the medications we would be putting Noah on in effort to avoid the fundo/g-tube surgeries....oh how I wish we could have found this man sooner!!
Thursday - They brought us to the treatment room for the antroduodenal manometry testing first thing in the morning. Noah was awake for all of this and felt nothing. They simply hooked the end of the cath that was in place to the machine and began monitoring him while he played and watched tv. At one point we did a therapeutic meal session with him as we do at home and they continued to monitor the motility through the small intestine...results - normal motility!!! Basically this means all of his muscles used in digestion are working properly. With motility questions out of the equation, we are now able to put the plan of action into motion! Now, here is where it gets super exciting! Dr Hyman was able to determine that Noah has pain from the point the food goes into his mouth and reaches his stomach until it passes through the intestine because of nerve damage due to multiple procedures, learned pain responses from reflux, intubation, altered anatomy due to the CDH, etc, etc...He diagnosed him with a sensory disorder but believes that it is 100% fixable and he feels that using his protocol, he can have Noah completely off of tube feeds in 13 weeks!!!!!
The Plan:
1. Completely bypass the stomach for a full 8 weeks and feed 100% of his daily caloric needs by g-j tube into the jejunum while his is sleeping.
2. Start a combination of Neurontin and amitriptyline for 6 months. These drugs were originally used for pain, seizures, and depression, however, used in smaller doses, they are very effective for pain and will basically change the way pain is transmitted by the nerves.
3. At the end of the 8th week, we will start him on Megase (an appetite stimulant) for 5 days. With every day he is taking the Megase, we will decrease the tube feeds by one hour. By this point, the pain is taken away and hunger is now introduced. The Megase is only for a week and the other meds will be discontinued after 6 months.

This protocol has a 90% success rate when followed exactly according to his direction! If this is true, Noah's life is about to change dramatically!!! We are extremely apprehensive about stopping Noah's therapeutic daily meals, but Dr Hyman stressed over and over the importance of stopping all painful experiences to the stomach until the medicine has time to do its job. If Noah WANTS to eat something, we don't have to discourage him, we just aren't to push him like what we have been doing. Naturally on his own, as the pain dissipates, he will eat willingly w/o the fear of pain. We will restart his theraputic meals in conjunction with feeding therapy when the Megase is started, but between now and then we will just continue to work on his chewing and oral motor excersises to keep up on the progress he has made there. We still need to consult with the feeding team in Evansville for their thoughts on this as well, but I am sure they will be on board.

We eagerly agreed to try this approach and scheduled Noah for a g-j tube placement Thursday afternoon. During the placement, Dr Hyman discovered an area of impacted stool the size of a grapefruit in his colon. (yep, that's a whole lotta poop!) Dr Hyman believes that this is also related to his sensory disorder and that he might be holding it for fear of a painful bowel movement (sorry if this is too much info!) He felt comfortable enough to release him to go home and directed us to use Miralax daily and follow up with an abdominal x-ray in two weeks. He wanted to make sure this is the issue and there is not some sort of other obstruction or underlying issue. They finally discharged him about 8pm that evening. We flew home Friday morning at 7am, so we never even actually saw the light of day in New Orleans (except through the window in his room!) It was a very busy few days to say the least!

Since we have been home, he is doing great, happy and cheerful, and thrilled to be back home! I know that I am missing a ton of info, we just learned so much, it's impossible to put it all down. Dr Hyman just has a totally different perspective on feeding and GI isues, different from everything we have ever been told or taught. We are so very blessed to have been able to go and, if this works, I can't even begin to explain how incredible that would be for Noah!! We wanted to thank eveyone who helped us keep things going at home so that we could go! Elliot and Zane had a great time with Grandma! I don't actually even know that Elliot wanted to come back home with us! Zane is now in Seattle for his spring break with Aunt Kelly and Uncle Jeff! I can't wait to hear all his stories when he gets home!

Lots to talk about....

We've been busy the last month or so planning some things for Noah. We haven't said much about it yet because we were still trying to make some firm decisions.
First of all, and super exciting, Noah is starting school in the fall! He will age out of First Steps this summer when he turns 3 and because he still qualifies for services such as OT and ST, he will transition to the school system. Zane's school offers a special education preschool program 4 days a week for 3 hours a day. We went over for our first transition meeting and I was able to see the classroom and meet the teachers. This is going to be wonderful for Noah! The other children in the class are very close to his level in terms of delay and special challenges. The bus even comes to pick him up and bring him home! Not to mention he will be at the same school with Zane! This being said, we have ALOT of work to do this summer to get him ready for this. His anxiety is still a huge issue and I won't get to go with him to school, so we are going to try and participate in as many activities as we can this summer to get him ready.
Our other big news is that we have been talking with a pediatric GI specialist from Louisiana Childrens in New Orleans. He had been mentioned to us a few times while we were in feeding clinic, but we truly hoped that his issues would resolve and it wouldn't come to this. After Noah's last g-tube catastrophe along with the continued pain and retching during meals and no forward movement in this area, we made contact with Dr Hyman. He has been very open with us and we have been communicating alot through email and phone. He specializes in motility, chronic pain, and severe feeding disorders. He recommended a two-day admission to Louisiana Childrens for antroduodenal mamometry, esophageal study and gastric sensations studies. This will detect abnormalities in digestive strength and coordination, and the threshold for which he has sensation in the stomach. Basically they are going to study his complete digestive system. These studies will be completed under general anesthesia. This was alot for us to digest when we first started considering it. We began talking to other GI's in our area and neighboring states, but could not find one that used they types of studies and treatment methods that Dr Hyman was using. We did get the blessing from his surgeon at U of M, who thought it was a good approach and is curious to see the outcome. It breaks my heart to see him go through another round of procedures, but if it gets us closer to making him feel better on a daily basis, maybe it will prevent further procedures down the road.
This being said, we leave for New Orleans on the 30th of March. He will be in the hospital on the 31st and 1st, and we will fly home on the 2nd. Dr Hyman truly believes that he can help Noah and we are praying this is the answer for him!
I also wanted to thank eveyone for the awesome donations you have sent us our CDH project to Mott Children's hospital! We can't wait to deliver these! We hope to deliver after our trip to New Orleans!

CDH Awareness Month!!!!

In honor of Congenital Diaphragmatic Hernia Awareness Month, Brian and I are putting together some bedside craft kits as well as collecting items to be distributed to kids in the NICU, PICU and pediatric floor at the University of Michigan Mott Children's Hospital. I can't tell you how many times we would be sitting in the hospital with Noah during any of his hospitalizations and a book cart or toy cart would stop by his room to drop off a brand new book or toy. It was was an amazing pick-me-up for Noah as well as so many of the kids who received these. We would love to be able to give back to the same service project that made those long days a little brighter! We will be collecting these the entire month of March. The hospital does require the items to be new, but no gift is too small!
A few ideas from the U of M wish list.
Craft Items - markers, crayons, coloring books, pencils, paper, any craft item will do!
DVD's - Any kids movies
CD's - Nature sounds, lullabies
Toys - Actions figures, barbies, Hot Wheels, Beanie Babies, baby rattles and teething toys, etc, etc.
Gift Cards - Walmart, Gas Cards (for parents traveling or staying far from home)
Games - Card games, Apples to Apples, Candy Land, any board games!

Monetary donations can be sent to:
C.S. Mott Children’s Hospital
Office of Community Relations
1500 E. Medical Center Dr.–F2519
Ann Arbor, MI 48109-5253

Please contact me if you wish to donate an item! I can't tell you how much the kids will appreciate these gifts!

One year ago.....

Elliot celebrated his 1st birthday yesterday!!!! This past year has been a whirlwind! After everything we were told throughout our pregnancy and his prenatal issues...he is now a healthy, happy, bouncing, walking, talking, demanding, 1 year old!! His personality is starting to shine and he is slowly learning to fight back and hold his own when it comes to Noah taking his toys. He of course eats anything you put in front of him and he is hitting all of his milestones as he should. After he started taking his first steps a few weeks ago, he hasn't stopped since! He loves his brothers (most of the time) and they both just adore him. He is short and stocky and has perfectly chubby, perfectly kissable cheeks!



We had to move his birthday party because of his recent RSV, but hope to be able to share lots of cake pictures soon when we can reschedule!
Happy Birthday Elliot! We love you!

A little excitement

(I actually wrote this last weekend and haven't had time to finish it and post it)
What an eventful week! Both Noah and Elliot came down with colds the beginning of last week and by the weekend, Elliot was showing no signs of improvement and spiked a high fever. I took them into the Dr and come to find out, they both had RSV. Elliot was by far the worst, his breathing was very wheezy, high fever, and refusing to eat. The pediatrician listened to Noah and thought that he sounded the same so rather than test him, just to go ahead and treat them both the same. We started breathing tx every 4 hours, but Elliot's fever got all the way up to 104.7! The pedi then started him on an antibiotic as well. Since then he has been fever free, but the respiratory issues are still bothing him. He is eating and drinking much better and overall, improving. I question as to whether Noah actually had RSV or not, because he did great with it. I know that he's older, but I still expected with his chronic lung issues, he would have struggled with it. We are fortunate that he did so well! Of course he is not without his own drama though! The day after we went to the Dr, he woke up in the morning dangling his mic-key button in his hand saying "uh-oh". We tried to put anther one in and found that the hole had almost completely closed. We were barely able to put a foley cath in to keep the hole open. They weren't able to get us in to see a surgeon in town for a week, so we went ahead and took him to U of M on Wednesday. They were able to use some topical lidocaine and had to dialate the hole quite a bit, but got a new button in. Since Noah has been going through mic-key buttons every couple of weeks they put a different type of button in that does not have a balloon. His high stomach acid east through the balloons so quickly, so we are hoping with this balloon free button, it will last longer. We also noticed strange red bumps on his face and eyelids a few days ago and they discovered an infection in his g-tube site. It appears as though his talents are getting better everyday, because apparently it is quite difficult to get an infection inside the site. My little overachiever...I felt horrible and guilty. His site is always red and irritated due to his high stomach acid, so we really didn't notice much of a difference until the tube was out and we could actually see down inside. They started him on a strong antibiotic and we are hoping it will clear up soon. I felt so bad for him, I know that whole experience was so traumatic, not to mention painful. I tried to woo him back by stopping at the gift shop on the way out and spending a little time with Big Bird....
(insert cute, adorable, yet somewhat sad and pathetic picture of Noah next to the 10 foot Big Bird in front of the Children's Hospital that would be here for your viewing enjoyment had Noah NOT pilfered the usb cable for my camera and stashed it. I have now searched the entire house for its whereabouts, and still nothing!)

Zane is still healthy as a horse, all of these germies passed him by. He came in second place last weekend at the Pine Wood Derby! We had a great time watching him! (again, with the mental photo inserts of Zane proudly displaying his 2nd place ribbon and cool pics of his car in action)
He's been bringing home more and more homework these past few weeks and I am embarrassed to say that I have a hard time helping! I have had to google his math on more than one occasion! Of course he thinks it's hysterical when he has to teach me how to do it. He is counting down the days till spring break and then summer vacation. I think we could all use a little warm sunny weather after the 10 inches of snow we got the past two days! School has been cancelled for two days and we are under a level 3 snow emergency right now! (Thank the Lord, school has since resumed!

Random pics...

Blog slackin'

Okay, so life at home after the feeding clinic has been a little crazy...hence my well intended blogging efforts, or lack there of...despite my lack of preparation, we had a GREAT holiday and truly enjoyed our time with family and friends. By the time it was all said and done, I was ready to get into our new routine.
Noah has had some difficulty with meals, but we are slowly getting back on schedule. He has lost over a pound since we have been back so once again, we are slipping in calories wherever we can. Getting in 5, 45min meals a day aside from our regular meals, has been most challenging and has required me to dust off my Time Management Skills book! We are doing three OT sessions, one ST session, and soon to start two Skype sessions with St Marys a week for a total of 6 sessions a week. Yowza! I am more than happy to have the support though to keep him going in the right direction and we love our therapists! We are still doing smooth purees and formula from a squeeze bottle. He did partake in a few holiday meals and loved showing off his chewing to everyone around him! He really takes pride in what he has learned! Each day he seems to be more interested in what we are eating and I can see why we are encouraged to do his meals separate from our own. He doesn't want anything to do with the purees if everyone else is eating something different. If we can continue to get his chewing skill to improve, he will be able to partake more and more in table food. I am just continually amazed and thankful for the feeding clinic and the progress he has made!
Elliot started walking this week! (sniffle, sniffle) I can't believe that my baby will be celebrating his 1st birthday in a month!! It's all happening so fast! He is an eating machine and we are working on phasing out the bottle and taking all of his liquids by sippy cup. He is waving, clapping, dancing, and is starting to say a few words as well. He has a very pleasant, happy, disposition and loves, loves, loves to eat!
Zane had a great Christmas and much to his dismay, started back to school (or prison as he calls it). We have had tons of snow on the ground and that's where he spends most of his time. He comes in long enough to warm up and dry off and then it's back out again! He and I went sledding the other day and my body totally paid a price for it! I wish I had half of his energy! He is gearing up for the big Pine Wood Derby for cubscouts in a few weeks. Noah is making a car too and will race with him!
I hope this finds everyone doing well and we can't say thanks enough for your continued prayers, support, and love!