Wednesday, March 25, 2009

Update on my Lily!

So lately I have had several people ask me how Lily is doing with her health is kind of complicated and long but I told them that I would blog about it so they could get the details. The only problem is, I haven't yet written about it! I have been reading so many blogs about mothers with ill children....maybe ill isn't even the word....seriously sick would be more like it. It just breaks my heart to see what they are going through and although what I have been through with Lily has been hard, we have always been blessed with a wonderful outcome...healing! I just feel like our problems are so minor compared to those but for those of you lucky enough to a completely healthy baby....I am jealous....thank God for that everyday, for it truly is a blessing! So here it is.....

There is a word for it but I cannot pronounce it correctly....much less spell I will just explain it! She has an immune system deficiency. Her body does not produce enough IgG antibodies....which is what your body uses to fight off viral and bacterial when she is exposed to something her little body cannot fight it off and she gets sick. And when she gets sick, she can't get rid of it because of the low immune something as simple as a cold turns into a three week long lung infection. And let me take a second to explain how Lily reacts to sickness....she completely shuts down! She won't eat, won't nurse....nothing, which makes things that much harder! She was losing weight (up to a pound in just a couple of weeks) and having problems gaining it back. We were sent to a wonderful specialist and he has been helping us get all of this under control and he us amazing! We were told to keep her home....away from everything for a couple we did and things have started to get better...much better! I am proud to report that Lily has been well for about two months....with a few fevers here and there but nothing major! She has also gained a little weight....well, at least she hasn't lost any! Praise the Lord, all of this is such an answered prayer for me! You have no idea how hard it is to see your baby constantly sick...I felt so completely helpless!

She is also dealing with another problem involving her immune system. Her body has not accepted her vaccinations ...which means she could easily catch one of the serious diseases she is supposed to be immune to...thanks to modern day science! I sometimes find myself consumed thinking about all of this....sometimes to the point of obsession! I panic if I hear someone cough while we are out at a restuarant or at Target (we have recently been given the okay to start taking Lily out at our discretion). I freak out if Kiley touches Lily before she her hands are clean and I am constantly reminding my husband to wash his hands the second he walks in the door...I just don't feel like we can risk her getting sick! I recently posted about Lily going to the church nursery for the first time....well it will be the last for a while, she ended up with a fever for a few days after and I can't help but think she was exposed to something....maybe we will try again here in a few months!

We will be returning to the specialist after Lily turns one and they will do blood tests to check her antibody levels and to see if there has been any change in her bodies response to her vaccinations. If things are not improving like they would like, we have the option of antibody infusions through an IV and larger quantities of the vaccines to see if her body will accept them....but I am just praying that none of this has to be done! We are so ready for her to be a healthy little baby and I feel a peace about this...God is healing her, I just know it!

I guess that is about all! Please continue to keep her in your prayers but also thank God for what he has already done in her healing process! And please lift up all the babies and their families who are struggling, my heart truly goes out to them!

Much Love!