Sunday, July 20, 2008

The long and the short of it


It has been a rough few weeks.  

1. Feeding
Our feeding challenges seem to be endless.  Just when we think we have figured out a workable protocol, Noah changes things up.  In the last month, we have gone from pumping formula to spoon feeding baby foods to using Noah's g-tube and a syringe to deliver a thickened concoction of formula, oatmeal cereal, and various other supplements designed to ensure calories and nutrition.  Noah will no longer suck on anything... the bottle, his pacifier, etc.  He bites on his fingers, pacifier and toys, but will only suck on rare occasions.  He also has regressed in his ability to eat from the spoon... he just lets the food sit in his mouth without using his tongue or trying to swallow.  While this is frustrating, I have to move past how the food gets in and concentrate on simply getting enough food/calories into Noah so that he gains weight.  We did get good news on Friday... Noah's chest x-ray was clear which means his vomiting has not landed any food in his lungs.  We also found out that Noah regained 7 ounces, bringing him up to 15.8 pounds (he had weighed over 16 pounds in early June)... also fabulous news.

2.  Hydration
Dehydration has been lurking in the shadows for the last few weeks.  With the transition to solid foods and even now as we use thickened formula, Noah's fluid intake has decreased significantly.  The challenge remains that Noah's stomach does not tolerated liquids well... they tend to increase the chance that he will throw up.  I have been giving him juice via his g-tube in between feedings and we have begun to pump water over night, but it is still a constant concern.  This is all complicated by the fact that Noah sweats a ton (especially his head) causing him to need even more fluids.

3.  Phlegm
(Isn't that a funny word?)  Noah has been having lots of phlegm issues lately.  It causes him to cough and gag, often getting him really upset when he can't clear the back of his throat.  One possible cause of the phlegm is the yogurt we have been feeding him to boost calories and protein... the milk in the yogurt apparently can cause extra secretions that drive Noah crazy.  When he sleeps, he sounds like an 80-year old man snoring and the need to clear his throat often wakes him up.  So, obviously, we have cut the yogurt out of his diet for the time being and are seeing some improvement.  

4.  Eyes
We go for our second follow up visit with the ophthalmologist on Tuesday.   As I have posted earlier, to our disappointment, the crossing has not been completely resolved by surgery.  We continue to patch his eyes, but have not noticed any dramatic results from this treatment.  He does not seem to have any problems seeing at this point, although his brain is probably receiving images from only one eye at a time.

5.  Gross motor skills
We have seen some improvement in Noah's gross motor skills over the last months, but this continues to be an area of significant delay.  Noah can roll from his tummy to his back with relative ease, but is resistant to rolling from his back to his tummy.  His physical therapist and I agree that Noah could roll in this direction, he simply doesn't because he hates being on his tummy!  Noah is unable to sit by himself... his head tends to pull him forward or backward and he doesn't use his arms at all to correct himself.  We try to keep him upright during the day, in his high chair or bumbo seat, so that his brain recognizes the correct perspective on the world.  He seems to want to sit up and we often catch him pulling against the straps of his car seat, but his muscles can't yet do the job.  Noah will bear weight on his legs, but he doesn't pull himself up into this position.  

6.  Verbal skills
This is another area of delay.  His babbling seems to be directly proportional to his nutrition... the more food he gets (and the less vomiting), the more he babbles.  I'm convinced that he has whole conversations with me but only through a series of vowel sounds.  He tends to keep his mouth open and that makes it difficult for him to use his lips and tongue to make any consonant sounds.  He sees a speech therapist from Rise and I am hopeful that if he hears other kids talking when he starts school that he will pick up some additional sounds.  Rise also has a lot of success teaching kids sign language... I would love it if Noah could learn to sign as a way to communicate.

Whew.  I'd be amazed if anyone is still reading after all that!  


Anonymous said...

Hi guys.
I just wanted to encourage you.
Our son also has a squint/& lazy eye (not sure what the medical terminology is). We put off surgery coz as you might know children's eyes only stabilise when they are about 8. We are patching & Ethan wears glasses. What I have done in the meantime is to play the Bible on CD while he sleeps ... it has made a difference ... not only to his eyes but also to his speech (Hebrews 4:12 & Psalm 107:20)
& just remember there are people all over the world praying for you & your family.

Heather S. said...

Deb - My heart goes out to you. I read your blog regularly and am amazed at your faith during a time when it is truly being tested. I will pray for peace and comfort for you as well as praying for Noah.

Ron said...

Hi. We are the couple from some months ago that you met at Midway Airport in Chicago. It's okay if you don't remember. We both know Russ. Anyway, we are reading your blog and praying for your family. It must be so very hard. And yet our God is so very good. Please know that He has not bailed out on you! His mercies are new every morning and can be counted on...

Even strangers love you and are praying for you because of the love of Christ...
Ron & Debbie Woods

Anonymous said...

I don't know you, but have been following your blog for some time now. I pray for you and your family-and believe that there is a reason you must go through all of this. I am amazed at your strength.


Fern said...

It's alarming to read of your many concerns, so I can't imagine how it must be for you. I will be praying that things improve and the answers start coming for some of these challenges you've been facing.

erin said...

I'm still reading. Thanks for letting us know what we can specifically pray for. It must be exhausting even to write it all out. Love you guys!

Anonymous said...

Praying for you all, Deb. Linda

Scott and Dena said...

oh, big hug going out to you. I am just praying so often for this precious boy. Love you all.


The Lauer Family