It has been a few days since my last update on the boys. Last week was very hectic and busy but we made it to the weekend. We managed to paint the entire backyard fence, weed the flower beds and plant new flowers plus lay down mulch. Wow, it was crazy. I also managed to clean my entire house (for the first time in probably too many months) because we held a St. Patrick's Day dinner at our home on Sunday. It was fun to have over friends and cook traditional Irish food! We even played a fun quiz and the winner (the Hansons) took home a floral centerpiece we arranged just for the occasion.
In way of the boys, things are marching along. Last week's feeding session was interesting. I do think this therapist knows her theories and is well studied but I had a hard time understanding why she kept insisting on giving food to Noah when she knows he has an oral aversion and HELLO, whenever you try to get him to take food from you (especially finger food) he absolutely refuses it...even if he wants it. If you set it down on his tray and turn your back you will find he has managed to eat it without you looking (he is our little controller). Anyways, needless to say Noah did NOT behave and refused everything she gave him plus was cranky for most of the session. He wanted down and wanted to play NOT eat. So hopefully this week goes better. Jonah ate most of what she gave them and we are actually graduating to some Stage 3 foods. Mostly veggies, fruit mixes and some dinners but we still have to mash up the really big chunks of food....but still, it is progress! Noah LOVES his peach star puffs and gobbles them down (I can hardly believe it). Pretty much everything else he plays with or throws on the floor. Jonah is curious but still not sure about the textures of finger foods, I am sure not being able to see things well is making it a bit more difficult for him.
Yesterday we saw the GI Clinic in Fresno. I thought they would not be happy with Noah's slow weight gain but the PA we saw thought he looked fine and said his growth has been slow but steady so she wasn't too worried. Jonah, of course, is doing fine. Noah weighed in at 19 pounds 7 ounces and Jonah 20 pounds 10 ounces. Both were around 29 inches (which I find interesting as the ped's office said Jonah weighed more and Noah less and that Noah was only a bit over 28 inches, however I think the GI Clinic's measuring methods are more accurate). So it was a quick visit. My dad was saying how crazy it is to travel over 4 hours round trip for a 1/2 hour visit with the doctor. Yup, I could not agree more. Come on Bakersfield, you need to get a children's hospital!
Today I called Duke University again. I don't know if anyone remembers my post about possible stem cell treatments for Jonah several months ago but with the new changes made by the Obama administration researchers are now able to pursue all areas of stem cell research. This just might open up possibilities for us. It is still a tough discussion for us but realistically with how difficult our pregnancy was with the boys I don't anticipate we will use our remaining three embryos. Our only other options right now would be to donate them eventually to a infertility bank. With my family history of cancer I doubt anyone would adopt our embryos and thus that doesn't leave us with many options. I do believe in our situation it would best serve our family to use these embryos to possibly change the course of Jonah's outcome. Stem cell research is nothing short of a miracle from God. I believe in the hand of providence when it comes to new research and science. I don't separate the two and I believe God has made this available to us at this time to create many, many possibilities for recovery in what were once hopeless cases.
I don't know if we are yet eligible for treatment. The woman I spoke with was more of a administrator so she was only able to give me the basics of what they are doing. She did take all our information, including everything regarding Jonah's current diagnosis' and premature birth. She did say researchers are in a better position to pursue stem cell treatments with the new reversal by President Obama. She again mentioned that likely Jonah would be required to undergo chemo so his body would accept the stem cells as anything that is not an exact match (i.e. cord blood saved from birth) is considered foreign and less likely to take so chemo gives a higher chance at success. She said the concern there is the nature of chemo and it's affects with children under 7. So I really don't know where things stand as she said she would be calling tomorrow with more information and that at least we would be entered in to a database where eventually we would be contacted about possibilities (but she did say that could be some time).
So I really don't know if I should even be too hopeful but all I can do is continue to research, pursue and pray for direction. I just feel a draw to this option and I don't feel I should give up on the possibility.
Jonah is continuing to be our chatter box. I think I mentioned in a prior posting that their new feeding therapist is pleasantly surprised at Jonah's verbal nature (yeah!) He is nothing but giggles and smiles. I truly don't know if I have seen a happier baby. He is generally extremely happy, aside from poopy diapers, being hungry and sudden unknown sounds that he does not understand (and normal babies have a hard time with this too) he is always smiling from ear to ear and chatting away. I am so grateful for his happy nature as he has what people in marketing/sales call a "win-win" attitude about life and that can only help him try to do everything he can. He is one determined, happy child.
Noah is climbing our stairs all the way to the top and is getting ever closer to walking. We are working on walking with push carts at physical therapy. At any time this little man will be up and walking and chasing after life. Noah continues to be our very vocal and very dramatic boy. He is in to everything, wants everything and demands attention at any given time. We are trying to discipline and help him realize he does, imagine this, have a brother who also has needs. Hopefully something will click soon.
I do have to say that the funnest part of everything is watching the two boys interact. Noah always giggles if he sees Jonah laughing and if Jonah is in his discovery center Noah immediately crawls over, climbs up and starts playing with his brother....both of them chatting away at each other. It is wonderful to see these two and I hope and pray that their relationship will grow stronger as they get older. I know Noah will be a protective, loving brother and will be Jonah's watch guard.
So I hear back from Duke University some time tomorrow and I will post what they have to say, even if that is only that we will be entered in their database for future contact. At least it is a possible step in a good direction.