I keep telling myself the posts revolving around Addison and her FPIES will soon be over and I can consistently blog about our daily life, but what I am realizing is that this is part of our daily life.
Just when things were looking up and I found myself feeling "normal" and seeing sleep and complete happiness in our child we hit a wall.
It seems that when I quit mixing breastmilk with the Nutramigen Addison was unable to tolerate the formula. We went from a very happy, playful, sleeping 8 month old to an extremely fussy, irritable, rolling as if her tummy was in pain, stinky poo (TMI - I know), and about three hours of sleep at night. She also starting rejecting the formula but acting so hungry. In a 12 hour stretch she only drank six ounces - by far not enough. The child care worker at bible study even made comment that she seems so hungry but she will only take a few sips and then begins to cry and refuses the bottle - not sure what is going on. Chris had noticed that her skin was not looking as hydrated and she was becoming pale again - all signs that are not good. My motherly instinct told me something wasn't right and I found myself slipping back into extreme emotion of my child is getting sick again - why is this happening???? Chris is working nights right now - and of course nights are just scary when your kid is not doing well and you are alone at home.
With all that being said Chris got in contact with the allergy doctor and she told us to try a different formula - Neocate. This formula has to be ordered and is extremely expensive. The nutritionist gave us five cans to try. I hurried down to the clinic to pick it up on Wednesday afternoon and Addison sucked down a bottle immediately - I was starting to feel better and a sense of relief came over me.
After being on Neocate Wednesday evening and all day Thursday Addison slept at night again and she is back to her happy playful little self.
I know God has a plan for her little life and along the way He is teaching me so many things. He deserves so much more than I give Him and I am so grateful for his love and care for us - especially my children.
I pray each night that God watches over both of my girls, but I feel so much gratitude for what He has done for Addison.
Financially we cannot do this, and honestly when I think about the fact that she could not tolerate what most kids with soy and milk allergies take I realize how severe her allergy is and emotionally it is draining, but like I told my parents God did not bring Addison into this world to leave us to do this alone. He will provide and He has and will continue to take care of our sweet girl.
So, that's where I've been lately. Thank you for the sweet comments from my previous post - bittersweet endings. I needed those encouraging comments as we went through this trial this week - I was feeling some mother guilt over the nursing when she could not tolerate the Nutramigen.
Have a wonderful weekend!
Well, Hello March
5 hours ago
7 comments:
What challenges you have faced in the last 8 months! You guys are amazing! I love that God uses our hard times to refine our faith and that sometimes we get to witness to other! Your faith in all these trials has brought encouragement to me!! Thank you!
Sara, are there any assistance programs for the new formula (pharmeceutical company maybe)? Or would WIC assist in paying for a portion of it?
All I can offer you is a long distance hug.
Your faith is growing with every trial and the grace you have shown is so encouraging.
So the Neocate is what she will be drinking now? Glad you were able to find something that worked. How long will she have to take it?
Hey Sara! I read your blog from time to time and enjoy hearing from another Mom. I feel like we have so much in common. Both due with our first borns during finals of 2nd year and both due with our second kiddos right as residency starts. Yes, we are pregnant again and due in July! God and His timing can be crazy, huh?! :)
Anyway, I used to work at The Little Light House as their school nurse and on two different occasions someone donated Neocate but we did not have anyone who really needed it because like Dion mentioned all those who used it got it paid for. So definitely look into that. Also, if you'd like I will pass on to the new nurse that if she ever gets any donated again you guys would be happy to take it off their hands. How's that sound? Could be a long shot, but ya never know! And like you said, God does provide!!!
I don't regularly blog anywhere so get in touch with me via facebook if you need/want. Hang in there!!!
We are currently checking about our insurance covering part of it. We have been talking with them and they have to review it, etc. Also, in Arkansas we do not qualify for WIC, etc. but in OK we would - oh how that stinks! As far as pharmeceutical reps go, Chris said he was going to hunt down the Neocate person and check.
Marianne, I would love any that gets donated. I'm in OK often enough that I could get it.
Trisha, she will be on this until she outgrows the allergy. We will start food challenges at three so at least until then. 60% outgrow FPIES by three, so that is our prayer.
I appreciate all of you guys and your prayers and encouragement. God will provide and I am praying that it will be through assistance!
Hey Sara - The muffin tin lunches are less about what goes into the tins and more about the tiny compartments. Kids love things compartmentalized and dipping compartments. We sometimes have a themed lunch: Mexican (tortilla chips, shredded cheese, avocados, etc.), fruit & cheese, shapes (all fish shapes or all circles), all the same color (yellow cheese, oranges, goldfish, carrots). The fun part is that finding 6 items to fill up the tins. Makes for a fun Monday.
Hi Sara...I'm in the Mom's Time bible study group @ IBC and I just stumbled across your blog somehow...I've been reading and catching up on little Addison. I kept her in the nursery this past Sunday and she is such a little joy. We have A LOT in common...my Avery (7 months) has a lot of the same issues as Miss Addison. We are on Elecare formula, which is just like Neocate. We should get together sometime!
Samantha Clinton
Post a Comment