Tuesday, March 18, 2008

Marathon of appointments

Yesterday Jack and I headed to Syracuse for 3 appointments in a row. First we saw the nutritionist and the GI. They were really impressed with how Jack is growing. I just had a hard time with his percentage on the growth chart. I see him day to day and he seems sooo big to me! It's almost crushing when I think about my big man and hear the doctors tell me that he is only in the 5th percentile. I really expected more. At least he is still growing. We did have some progress though. We have switched him off of Neocate, which is an elemental formula with all of the protiens broken down, to Vital Jr., which is only partially broken down. So far he has done really well on it. The hope is that if he tolerates the new formula for 6 months then we'll be able to switch him to pediasure. His new formula is really easy because it comes pre-mixed in 8 ounce cans. It is a french vanilla flavor which is a nice switch for us from stinky Neocate. It smells so good I would even drink it. It smells like vanilla cream cookies. yummy!

After those appointments we were able to go and visit all of the wonderful nurses at the NICU who cared so lovingly for Jack. It was so wonderful to see everyone again and for everyone to see Mr. Jack in his handsome man glasses. He has overcome so many obstacles so many people thought would keep him down. It's wonderful for all of the people who brought Jack through the hardest times to get to see him do all of his big boy tricks. I love all of you guys!!!

Then, we went to the Nephrologist (which is Jack's kidney doctor). As usual, Jack freaked out when they tried to take his blood pressure. We got no news but they did discontinue one of his medications. They are going to try to get into the OR on April 9th while he's having surgery to take an accurate blood pressure. Who knew a blood pressure could be so challenging but that's just Jack's style.

Chocolate tasting party

We had an amazing chocolate tasting party tonight. We had a wonderful group of friends over and Life's So Sweet Chocolate catered the sweets. We had Bailey's Irish cream truffles, Chocolate dipped peanut butter pretzles, White chocolate dipped pears, Aztec truffles (with chili powder), dark chocolate cocoa truffles, dark chocolate dipped dragon fruit, and berry clusters with dark chocolate, raisins, golden raisins, dried cherries and currants. The chocolate was amazing, the conversation was great and overall it was a wonderful night. Thank you to everyone who came!!!

Friday, March 14, 2008

The last 2 weeks

Sorry I haven't been able to post for a while. We have been living crazy lives and then there is always the fact that Jack Loves the computer. We'll start with two weeks ago and move to today. Enjoy all the pictures and videos!!

A New Sweater from Grandma

I'm such a handsome man!!!!!

I can't figure out how to turn this picture but it is still cute!!!

Thanks for making me this very handsome sweater and hat Grandma Sharon! I really really like it! The Monkey buttons are really cute too!

Grandma and Grandpa Mac Came to Visit!

My mom and dad came for a wonderful visit this past week. It was wonderful to have my mom's cooking and not having to worry about doing the dishes or the laundry. It is wonderful that my mom comes all this way and still helps me around the house and does the grocery shopping and cooking. We had a wonderful time playing cards and doing things around Ithaca Even though we had 2 ice storms and spent a whole day without power. I'm glad you didn't freeze too much Mom and Dad!!!!

Another great thing about my parents coming is that they brought us 50 pounds of beef. That's right.....50!!! Beef is VERY expensive here in NY. We were at the grocery store while they were here and we saw a package of 2 NY strips for $21. My parents live in Houston and can get them for $1.99 per pound on sale. So, They stock up their freezer in the weeks before they come and bring us as much as they can fit in their suitcases. Hopefully it will last us until June when we go down and we can bring some back with us!

We're on the way to the airport to pick up Grandma and Grandpa!!! I'm so excited!!!

Thanks for my new concrete mixer Uncle Dennis!!!!

I love reading this story with my Grandma!

I really love shaking my new moraccas and playing with my other instruments. Thank you!!!

Thanks for coming Grandma and Grandpa! I had a great time!!!!

Another Trip to the ER

On Monday the 10th Philip woke me up at about 6 am because Jack's balloon in his button had burst sometime in the middle of the night and had come out. Jack's jammies and bed was soaked with milk. We woke him up and brought him out into the living room to try to get a better look at everything. Jack's stoma (the hole into his stomach) acts like your ear when you first get it pierced. Once you take out the earring the hole starts to close on its own. His stoma is the same way even though it has been 16 months since he got his tube. When we finally got a look at it we could see that it was closed. We tried for about 15 minutes to get the smallest tube in but we couldn't. The tube we had at home was not stiff enough to push through. We had to get him to the ER fast because if the hole completely closes then Jack has to have surgery to re-open it.

They were really good about getting us into a room right away. However, the nurse practitioner would not help Jack until we gave him his full medical history. I'm sure how all of you who've been in this situation know how I was feeling. The momma bear was hungry and a juicy human was messing with her cub. He told me it would take hours for it to close all the way. IT HAD ALREADY BEEN HOURS!! I looked at him and told him that if he wasn't going to help us then I'd just have to do it on my own. (I didn't say it that nicely) So I grabbed the 8 french tube and started to dialate the hole. Now, for those of you who are not familiar with tube sizes they go by even numbers. An 8 French tube is about the size of a piece of cooked spaghetti. Jack's stoma was a 12 French which is a little bigger than a pipe cleaner. After a lot of trying, I finally felt the skin seperate and the tube slid in a little further. We kept trying and trying and slowly we were able to get the smallest tube in. From there we had to wait about 15 minutes and then try to put in the 10 French tube. Philip, who has never changed a tube before, was able to dialate the stoma to a 10 French. Keep in mind at this point the nurse practitioner was still not helping and we had not seen a doctor. I was furious! Since when do you go to an ER and have to treat your child yourself? We had to wait another 15 minutes before we could try to get the 12 French button in. Shortly before Philip and I were going to try the doctor came in. He saw Jack's button laying on the bed and asked "So, What is that exactly?" I wish I could have seen my face because I am sure that my jaw dropped open. How can a doctor not know what a button looks like? He had no idea how they even worked and asked us a whole bunch of questions about it. Then he proceded to tell us that he could put it in for us. Philip just looked at him and said, "No, I think we can get it in if you'll just hold him down". It was pretty funny. Here we have this ER doc holding Jack and the parents are performing the procedure. We were out of there in 2 hours, which is record time for the ER. It just goes to show you that the doctors are the ones that hold you up. The only good thing about the trip was that we left with 7 new tubes of various sizes so that next time we'll have brand new tubes with rigidity to get in there. After we got home Jack took a nap when we got home but he was a wonderful happy boy the rest of the day! We even took him to get his pictures taken that afternoon and they were the best we've ever had taken!

My New Water Table!!

I bought Jack a Sand and Water table the other day even though I know that he hates water more than anything in this world. I was certain I was wasting my money but out OT thought it was a good idea for him to be able to try and I agreed. The day I bought it out OT came and I put it together while she worked with Jack. Finally he noticed I was doing something and came over to check it out. He was banging his hands in the dry table so we thought we'd see what happeded when we added warm water. To our suprise Jack stood there and splashed his hands in the water! He played for 45 minutes! We were SHOCKED! This child could not be my precious Jack who hates the water! The table came with a small boat and a bulldozer. He really loved playing with the boat but was adamant about not having the bulldozer in the water. He'd get upset if we ut it in and then throw it out! He's so silly! I was able to take a video and some pictures of his first time playing with the table!!


I have been working so hard to get Jack to wear his glasses with no success. But then on Wednesday we had a session with our vision and occupational therapists. They made him put on his glasses and after about 15 minutes of protest they got him distracted and he wore them for about 30 minutes. Then, yesterday morning I put them on him with little protest and he wore them all day!!!! He did the same today! It seems he has realized they actually help him!

Sunday, March 2, 2008

Daddy's Birthday

Today was Philip's birthday. We are exactly one month apart so now he's finally in the quarter century club. We celebrated the day by having homemade cinnamon rolls when he woke up, going to the inaugural meeting of our support group, relaxing, and having a wonderful dinner. Later we will enjoy the pumpkin swirl cheesecake I made for him! I think he had a great day.

More on the support group... A few parents recieving therapy services from EI expressed a desire to meet other parents with children with special needs. We were finally able to meet the wonderful families today. Most of the kids played well with each other. All except Jack. He had a problem with sharing his toys and decided he'd rather be in crazy man mode than play with my new friends mode. It was ok though. Hopefully he'll play a little better next time. It was just so nice to be able to meet some other people who knew what it is like to have a medically fragile child. It was interesting to find out that two of the families had met while inpatient at the hospital and we had met one of those families at the doctors office and now we are in the same group! Small world! I can't wait for our next meeting!