Friday, October 30, 2009

Wrapping up week 1!!

While outsiders might think that we aren't doing much, I think Noah has made amazing progress. We are now up to 20 minute sessions in the chair in the therapy room, with only a few requests to get down. He has a very hard time with transition and they have found that he does better with longer breaks in between and longer session times. Right now they are working on putting a spoon, cup, and bottle with a straw to his mouth. A typical session goes like this: Set the timer, start a movie, play with toys. Every minute, the movie goes off, toys are pushed away and one of the three things is put to his lips for a count of three. Then the movie goes back on and the toys come back. All the while they are introducing touch and physical interaction with him. He is very slowly getting to the point where he is allowing the water and spoon into his mouth. They have decided not to transition me out of the room just yet due to his high anxiety issues. He is getting very comfortable with the team and will even let them hold him and get him up and down from the chair. This is HUGE for Noah! They are still working on feeding tube changes and we are moving up on the formula transition. It might take another week to where he is 100% on the specialized formula. I know that these therapy sessions sound so simple and generic, but each move they make has a purpose. I can totally see how the key to the success of this program is repetition, reward, and reintroduction. They have noticed that he has a need for things to be the same and change and transition is very difficult for him. They said is very hypersensitive and that this is probably mainly due to his long medical history and all that he has had to endure. There is still the big issue of his internal gut issues. The GI dr that was formally involved in the program has relocated to New Orleans. He has a reputation of being one of the best pediatric GI dr's around. We may, in the future, need to consult with him, although the director of the program is also very fond of the team in Cincinnati, so that might be a closer option for us.
We are just so very blessed to be here. I love the team of therapists and I strongly believe in this program. Their beliefs and philosophies on feeding issues are truly fascinating!
We are heading home tonight after the afternoon sessions! Yay! It will be a quick weekend, but I am so ready! I can't wait to see Zane and Brian and go Trick-Or-Treating with the boys. Not to mention, sleep in my own bed!
Hope you all have a safe and Happy Halloween!
P.S. If you could, please keep little Jamie in your prayers. He is having a rough time after a very difficult CDH reherniation repair. It's so difficult to have your baby back in the hospital and on the vent after being home and thriving. Not to mention being seperated from your other child again as well. His mom is Amazing with a capital "A"!

Thursday, October 29, 2009

Tuesday, October 27, 2009

Intensive Feeding Program - week 1

Another day down! Today was very interesting and quite different from yesterday. I love that the team is so vested in Noah and his individual needs. They made sure to have toys, puzzles, and videos that he especially likes and in between sessions they all come into the playroom and play with him. Today's sessions did not involve any food, but instead focused on transitioning me out of the room. Again, he would sit in his feeding chair for 10 minute intervals but I would sit across from him and the therapist that was working with him at the time, would sit next to him. The first couple of intervals he screamed and cried the entire 10 minutes, but after the 3rd one, he did so much better. I would think by the end of the week, I will be out of the room completely. We also began introducing oral motor excersises. Every few minutes they would stop, push the toy away that he was playing with and tell him it was time for his exercises, have me do them, and when I was done, he would get to play again. Each time we are in a treatment session, the other members of the team are watching him on camera. They literally watch his every move and have picked up so much from their observations.
1. They feel that Noah's anxiety issues and irritability is due to something internal. They have noticed these issues at an all time high just after a bolus feeding. They said his behavior is that of a child that chronically just doesn't feel good.
2. They are highly suspicious of a milk protein allergy and have decided to switch his formula to a highly specialized casein free formula. The downside is that it can only be made to a 30cal concentrate, so we are going to lose some calories in doing so. They are hoping we can get him eating the difference soon!
3. They are adding another antacid for a total of 2, 4x a day.
4. They truly feel he has issues in his gut and hope that the formula change and addition of another med will help alleviate some discomfort. They are worried that he can only handle 60mls at a time without retching. They feel at his age and size he should be able to tolerate far more in his stomach that this.
Overall, I think he had a great day. I am so excited to see the progress continue and finally get him going in the right direction.
Elliot is still going to need some time to adjust, he didn't eat much or nap at daycare again today. Needless to say, I had no complaints from him at dinner and he went right to sleep at bedtime!

Monday, October 26, 2009

Intensive Feeding Program - Week #1

So, we managed to get settled in to a routine with bedtime and naps in the hotel over the weekend and the weather was gorgeous here, so we were able to get outside quite a bit. There is a huge pond behind the hotel with a sidewalk around it and about a million ducks. We spent alot of time going for walks and feeding the ducks and the fish. This morning was Noah's first day of therapy as well as Elliot's first day at daycare. The staff at the clinic is fantastic! They are so knowledgeable and friendly. We spent much of today doing introductions and touring the clinic. During the first three therapy sessions, Noah was presented with a variety of foods and a drink. For today only, I sat in the room with him, just he and I. Surprisingly we found a great feeding chair that he loved and he was quite willing to sit in it each time. Of course, not one morsel of the food made it to his lips, but they were really just trying to get a feel for what they were working with. The last half of the day he would go into the treatment room with myself and one member of the team and would simply sit in his chair and play with the therapist for 10 minutes. When the timer went off, he was aloud to get down. He really had a great time and did great from the anxiety standpoint. In fact, he only had about 2 or 3 tiny meltdowns that were quickly alleviated with a distraction. They went easy on him today, but tomorrow the work will begin!
Elliot, on the other hand, didn't have as much fun. As soon as he saw me when I came to pick him up, he belted out in a cry that was enough to drive me to tears right then. He was soooo mad at me! The teacher at the daycare said she had to hold him the whole day and he only ate about 4oz of his bottle all day. By the time we got "home", he was back to his happy, lovable self. I am praying that he gets used to it and has better days to come!
Brian headed back to Ft Wayne this morning, but we will get to see him and Zane this weekend for Halloween!

Friday, October 23, 2009

We're here...well at least half of us.

So Elliot and I packed up the car and headed out to Evansville yesterday. We wanted to arrive early to tour the daycare that Elliot will be at and get checked into the hotel. Brian is working today, but due to arrive tonight with Noah.
Our drive was actually pretty good, just over 6 hours, including 1 stop along the way. Elliot did awesome in the car! When we arrived, I discovered the first of my dilemmas. How to unload an entire van full of junk with a baby in tow...Hmmmm. With the risk of looking like a complete freak show, I strapped Elliot into his booster chair and tied it onto a luggage cart and away we went. Of course I am on the 2nd floor, but thankfully there is an elevator in the hotel. So 5 carloads later, I decided to throw in the towel and leave the rest for when Brian got here. So, after unloading the last of the stuff off the cart (including Elliot), I opened the room door to push it into the hallway. As I was doing so, I heard a "thud" behind me and a sickening "click" sound. The sound of my hotel door closing with my 8 month old inside. Needless to say, I made my presence known when I arrived at the front desk at 80mph bawling that I had locked my son in the room and needed a new key. Rest assured, Elliot came out unscathed and didn't even notice I was gone. I doubt I will receive "mother-of-the-year" for that one. Okay, so recovering from that one took a little awhile, but we made it through the night in one piece. This morning we headed off to the daycare for a tour and to complete all the paperwork. Elliot will be attending the Ark Crisis Daycare. This is a wonderful state licensed daycare that services families in need of temporary childcare due to emergencies, illness, etc. They have graciously agreed to take Elliot for the entire time that Noah is in the program...and get's free. They rely on donations and funding from local businesses to keep their doors open. What an amazing organization. I am hoping that Brian and I can give back to them as much as possible.
We want to give thanks again to our amazing, wonderful, supportive, loyal, generous, loving group of family and friends back home. We are never alone! I remind myself daily that there are many families going through these types of situations that have no support and we are forever grateful of our blessings!

Wednesday, October 7, 2009

Fuzzi Bunz, a haircut, and a check up from Dr Noah?

I am so happy to announce we have switched to cloth diapers for Elliot! I love them! Elliot is Mr Sensitive when it comes to diapers and he breaks out everywhere when he wears disposable. Just recently we have made the switch. Not only is it super comfortable, it's fashionable too, not to mention the benefits it has for the enviornment and our wallet! We have gone with Fuzzi Bunz One Size so they are adjustable all the way to fit the toddler years. No more diaper rash, no more waste, and best of all, no more money spent on disposable diapers! I can't say enough about the great benefits! Mason's mom, Rosie, has started her own cloth diaper business. Check out their site!

Now that's a pretty cute bum!

Elliot had his second haircut this week!

I promise the following images were not staged in any way. Noah did this all by himself! Sad or cute?

Thursday, October 1, 2009

More b-day pics....

Zane turns 10!

Zane had a great time turning double digits! His actual birthday was Monday, but we celebrated it last Saturday. He started the day off with a football game. He kept asking his coach how much longer they had left in the game..hmmm...I think he may have been a bit anxious to get to the rest of the festivities. After his game we opened presents and watched some old home video of him in the hospital and during the first year. Wow - is all I have to say about that...the ole cliche, "where does the time go" is an understatement. After presents he wanted to have lunch at Texas Roadhouse. We left Noah and Elliot behind since Noah is under "lock down". Plus, I will not lie and say it wasn't very peaceful to have lunch without them. (does that make me terrible?) Anyway, later that night we set up the backyard to look like and army battlefield and Zane invited his cousins over for an Air soft battle. For those of you that may not be familiar, Air soft guns are BB guns that shoot plastic bullets. They say being hit with one feels similar to a snap with a rubber band. Air soft brings out the kid in everyone, as you may notice Brian and Uncle Jeremy in the middle of the action...They ended the night with by camping out in the backyard and roasting Twizzlers over the fire..(when one finds themselves w/o marshmallows, get creative).
Sometimes I wonder what it would be like to have a princess party or the living room littered with Barbie dolls, but I never get tired of watching the rough and tumble of my boys together. My mom told me I was meant to be the mother of boys, and she couldn't be more right. Even though I am sure to have many hair splitting days, I wouldn't change it for the world!