Monday, January 18, 2010

Hi Again!

Hi everyone, it's been awhile since I have done a post and I'm sorry, we went home for a few days for a bit of a break. Thank you for all of the continued prayers! We have been able to feel them a lot lately!

Last Friday we had a meeting with a genetisist Dr. Schuckly and he was able to give us a bunch of answers as to why Andrew is still in the NICU. They have found out that Andrew has 22q11.2 Deletion Syndrom. This mean that Andrew is missing some of his DNA. When they took a very close look at his chromosome 22 they found that only 1 of the 2 match properly. Josh and I will be taking a blood test to see if we are carriers of this syndrom or if it just happened this once, the Dr. does not think that we carry it, but is doing the blood test just to be sure. We were told that 80% to 90% of babies with this syndrom are born with heart defects or a cleft palat, because Andrew had neither of these the Drs. did not think to test him for this until all the other posibilities were ruled out. We have so much to be thankful for!

One of the other disorders that come with this syndrom are the failier of the back of the palat and the throat to close the space connecting the mouth and the nose during speech, this means that Andrew might have a difficult time learning how to talk and how to pronounce words when he grows older, it might sound like he has a cold all of the time. But for now this is what is causing the throwing up. Because it is not properly closed he throws up through his noce instead of his mouth which in turn causes him to desaturate in his oxygen. Although his spitting up has been getting less we are noticing that whenever he strains to poop he seems to throw up. Now the reason he has a strain so much is because he was born with an imperferated anus, another symtom of the 22q11.1 syndrom. His anus was not all the way closed so they did not need to do an emergency surgery right after birth, but rather decided to wait and do it just before he started eating baby foods and cereals which would make it harded for him to stool. But seeing as it is causing him to throw up so now Dr. Schuckly said that he would talk to the surgen again and see if maybe they should do the surgery right away making it easier for Andrew and then helping the straining and throwing up to stop, so we still have not heard what the decsion was there.

Besides these affects babies with this syndrom can also have a problem with thier immune systems, and therefore have more infections, but most of the time they have out grown this by thier 1st birthday. Having low calcium can be another problem which could lead to seizures if the calcium got to low, they have been keeping an eye on Andrew's calcium level and if need be they will give him calcium, which is something we can also do at home. Learning stuff might also be a bit of a struggle for Andrew, and he might require extra time and patience, not that he will not be able to learn, he might just need a bit of a different learning style. But all these symtoms are "maybe". We do not know how servere it will be, what symtoms he will have, and if he will have any, so far we have been blessed that he does not have the cleft palat or any heart problems and who knows what else the Lord has on store for us! We are so thankful for the beautiful and ever so special baby that He has given us and we will love him no matter what! We know that God knows what He is doing, and we will trust Him through it all!

We want to thank you for your thoughts and prayers as we went through this last week, even though it may not have been what we would have liked to hear we are happy to have some answers to our questions at last! We continue to covet your prayers as we continue to wait on the Lord!
There will be further updates as we get more results.

5 comments:

Anonymous said...

Rebecca & Josh I have been following your blog regularly. I was waiting for you to tell us more about your little one, I am so sorry to hear that you got some sad news from the doctors! We know that God is in control and He will control all the things in little Andrews body as well. We will just keep praying that the Lord will heal Andy's little body, if it is His will! All the best to all three of you. Love, Uncle Jake & Aunt Helena Elias

Living In His Blessings said...

To our dear children,
May God's peace be with you for another day. Praying that God will provide strength as you need it. He is with you all the way and will guide you through this trial as well. That is such a nice picture,it brought tears to my eyes and just melted my heart. I can see that your love for AJ will be even greater as you take care of this very special God has placed in your life.

Love and prayers always,Mom and Dad Penner

Carrie Cooper said...

Just want you to know we are still praying!! We know this is all hard.. I remember getting those talks and not knowing what was going on! Those are the hardest moments but you know those are also the moments when I clung to my Lord the most!!! Oh the flood of memories just thinking back on all this! One day soon my dear, one day soon, that will be just what they are memories!! We love you all and are praying for God to put his protective hand about all 3 of you but especially little Andrew!!

With Love in Christ
The Coopers

Anonymous said...

I am still praying for all of you.

It's good to have some answers to the questions,and it's amazing to know that God has Andy right in his hand and everything will be ok.


Give Andy a hug from auntie Rae,if you don't mind :)

I love you all so much!

Rae

Laura said...

Josh and Rebecca, little Andrew is a precious perfect gift from the Lord. Hapy you are now getting some long awaited for answers. We continue to lift you daily to the Lord. May His hand be upon Andrew, and His strength be with you. His light shines within you.

Much Love,
The Muncks