Sunday, April 27, 2008
Happy Birthday Mom!!
We all just had cake and ice cream for Tashia's 31st birthday, which was today (no we didn't let James have any)
Last night and today were much better for James. His feedings are now consistent and staying down. We switched to pre-mixed formula and now Mom's fresh stuff is keeping up. We are still adding formula to it to add nutrients and calories. Tony didn't get moved up to this level until 1 month old.
We went through Tony's caring bridge site to refresh our memory on symptoms and treatments. To be honest, it was surprising to see everything we went through in hindsight and how positive we stayed through the ordeal. With James, it's much different as we know the likely outcome already. We will continue to be positive and care for him best we can, but the mourning process has already started as nothing short of miraculous healing will see this little guy to his 1st birthday. We are already thinking about funerals and burials when our son is 4 days old. We do have the same eternal hope that carries us through any of our trials. Especially the peace knowing that these bodies are only earthy vessels and that James would join Tony in a place with no pain or discomfort.
A few other things we noticed were that Tony's worst blister days were when he came home with us. This is leading us to believe that the increased handling or the heat build up with the blankets we use is causing more blisters. Since yesterday it's not uncommon to see 5 or more new blisters in a few hour period. Most are small, but his diaper area is showing the affects. Hopefully between changes in how we hold him and keep him bundled will slow those down. Also, Grandma Beth made a few custom diapers with special soft cloth which should he the blisters and the messes.
Also, we were reminded how much time was spent in the hospital and how long it would take to get out. It is alreay a great blessing to be at home already and it's possible that we would not go back until the end.
Overall James is very similar to Tony. He has blisters in his mouth that does affect feeding to some degree. Also there is evidence that he may already have blisters down his airways. Tony had scarring of his eppiglotis (the flap that changes breathing to feeding). It's likely that this lead to Tony's aspiration (food in lungs). Which likely eventually lead to further damage.
James still is doing quite well, but there is not much we can do for preventing internal trauma. It's a delicate balance between pushing his nourishment and preventing aspiration.
It's our intent to finally get all our pictures on the web for all to view. Just keep in mind if it seems we are getting larger, it's because of all the great meals everyone is bringing us, especially all the goodies. We are truly blessed with all the support and prayers we are receiving.
One thing we haven't mentioned is how Abby fits into all of this. It is very hard on her and us as we are focusing most of our attention on James and relying on others to spend time with her. She doesn't know what to think of all of this and it seems like she is growing up so fast right now. It is encouraging to know that if James does leave us that our house won't be so lonely this time. Abby won't let us stay inactive.
We do welcome phone calls and visitors. Who would want to show off a good looking dude like James? Please call before visiting to check if it's a good time and try again later if we don't answer. Incoming minutes are free, so with amount we are on the phone, we would rather take a call and make one.
From the book of Job we find comfort that God is in control of all that affects us. That Satan can only afflict us to the point that God allows. And He has promised to not give us anything more than we can handle. As we know from experience, with His strength, that is a lot!
Thank you for your all your prayers and following our journey. Please pray that we will cherish this time with James and continue to rely on God's grace to see us through. Also, please pray for a friend and her family as her mother has passed away.
Those that followed Tony's journey may remember a friend that we met in Texas who also lost her son shortly after us. Their situation was similar that involved an unrelated terminal genetic disease. They also had another pregnancy that resulted in another son with the same condition. He is now 7 months old and near his end. Please pray for their strength and faith through their trial.
in His peace,
Stu, Birthday Mom, Abby and the Handsome Guy (James of course!)