Monday, May 4, 2009

Update # 2

Now for Mr Noah! He went to the pediatrician last week as well for a check up and shots. I tried to express to the Dr a few concerns and ended up leaving frustrated and second guessing myself. We know that Noah hit some sort of wall about 6-7 weeks ago with eating. He was doing so well and out of nowhere, stopped eating and drinking. In the last week he has picked up a little, but nothing like he was. We are now back to feeding him through the J all night and giving 2 boluses of formula and 5 boluses of water during the day through the G-tube. I have noticed that as the day wears on, his eyes appear sunken in and dark underneath and his color is sort of pale and grey. The past few days I have noticed slight swelling in his hands and feet. He has always had a few "potty" issues, but I have noticed these now more than ever as well. I voiced all this to his Dr and inquired about anemia or vitamin definciancies and she said that he should be getting all the vitamins he needs as well as iron through his formula. She suggested that his coloring and sunken eyes could just be that he is tired. Of course I don't want to put Noah through anymore than he has been through, but I really think he needs some labs drawn and a deeper look into what may be going on with him. The pedi wrote a script for outpatient OT with a feeding specialist and speech therapy as well. I spoke with Jeannie at U of M and she suggested that they draw a CBC and check vitamin D. The pedi said it was unnecessary and to just wait it out. I know in my gut that something is going on, I just don't know what, but I will bet it's not just that he is tired... We are going to try adding in an extra vitamin, daily probiotics and good old fashion Mylicon drops for gas.
We had our first evaluation with the OT feeding specialist today and it could not have gone better! I was terrified that Noah would not tolerate it and his anxiety would be at its prime, but he warmed right up to her and played with toys. By the end of the evaluation he was walking the halls as if he owned the place, waving, blowing kisses and yelling, "luh loo, luh loo!!" (love you) The OT was FABULOUS and I instantly felt that she totally understood. She agreed that it sounded as if something else was going on and lab work would be very helpful. Feeding issues are so frustrating and there are so many opinions and schools of thought when it comes to tube fed kids and oral aversions. It was so nice to have someone that looks at the whole picture and has so much experience with these issues. He will have his speech eval next week and the two therapists will get together and come up with a plan. I am really looking forward to making some headway!
So, I am going to call the pediatrician back this week and make another request for some lab work. I know there are some nurses out there in blog world, I would love to hear any suggestions!


Weylin and Tori said...

I am so glad that there is at least someone on the same page as you! Your doc needs to step up and just order the labs. If nothing else, they could show that things are fine! I truly hope that the OT and speech help Noah. These feeding problems are so frustrating and so misunderstood! Way to go Zane in all the activities--a triathalon! Wow! Can't wait to see you guys!

The Douglas'

Elizabeth said...

Not a nurse but will say that going with Mommy gut is a good thing!

Wonderful about this Feeding theripist - and that Noah warmed up to her - that says it all!

Keeping you all in my thoughts and prayers and sending Sir Noah some weight gain chants!

Anonymous said...

Hi Carrie!! I am so glad you updated your blog as I get concerned when I don't hear how everyone is doing!!! :) I always hope no news is good news!! :) I can imagine you are SOOO busy with 3 awesome boys! :) Happy Mothers Day!! I will continue to pray God gives you wisdom and strength and that Noah will show some great gains in the near future!! You are an AWESOME mother!!! Much Love,

bikurgurl said...

The only thing that has helped us with weight is Chocolate Instant breakfast in whole milk (soy milk for Xaven). That's probably not an option for little Noah, but Xaven would still rather drink his calories than eat them :)

Good Luck -- we keep you all in our thoughts and prayers!!

Love, Kelly