Wednesday, November 29, 2006
Now it's just different. I don't wonder if she'll live, but I wonder what kind of a life my sweet daughter will have. As I stood up at bible study on Tuesday (and I really HATE to talk in front of people) I realized that I'm scared. I thought I was tough enough to stand there and tell these women of the struggles that I face with Ella...and I broke down. I haven't stopped crying. I bawled to Joe twice yesterday, I broke down to my mother today, and I sat on the couch most of the day (Ella and I both in our PJs) and just held my daughter and cried...she slept most of the day and doesn't have a clue of her emotional mother. After physical therapy on Tuesday I feel drained. Not physically the way Ella does, but emotionally. I know that we have a God who performs miracles, but as Matt Mooney says, that's doesn't mean that it's in God's plan to perform those miracles. I hold on to a prayer that was echoed Tuesday by one of the ladies at church..."that there be a complete healing of Ella"...but only if it's God's will...that's hard. God gives us our children as gifts and we are to hold them out to Him with open hands...Marian is good at reminding me of that...but it's so hard when you want to hold them close. One thing that's hard for me is that I can't "fix" Ella. There is nothing I can do. As I mentioned therapy was hard this week...we are starting to figure out alternatives if Ella doesn't walk, either when she should or ever. That's hard to swallow. We also talked about the fact that Ella is behind (an understatement) developmentally, and Kathy had to remind me that Ella isn't on the slow-end of "normal"...she's on a completely different chart of neurologically damaged. I don't want my daughter to be "damaged"!! I don't want her to struggle!! I want her to be able to play with other kids, and go to dances, and walk up the stairs, and have a great education, and have all the opportunities I had...AND MORE!! I am prideful in the things that I think are important for Ella, but that's how I feel. They aren't saying she won't be able to walk, but the further we get without her being able to instinctively hold her head up (the way we automatically breathe) is just that much more of a chance that she will have physical and learning problems down the road. Please pray for my hopeful heart. Pray for my faith in a faithful God. He has been SO good to us in our marriage and now our daughter...may I remember that daily. As we enter into this season that is about the birth of a man who saved us from all sin, may I remember that Ella's greatest accomplishment in life won't be to walk...it will be to accept Christ as her Lord and Savior. May God keep me focused on Him, when I want to focus on my wants and needs.
A verse I read tonight on the Mooney's blog and it stuck with me:
II Cor. 1:3,4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
May we all have comfort with where God has us and where we can go with His guidance.
Monday, November 27, 2006
On to what is happening with Ella. It's easiest for me to go top-down so let me see if I can remember everything. Currently her brain is in good shape. As we've mentioned before there is a lot of bruising from the seizures and that causes a deterioration of the area that was damaged. This means that her brain needs to learn to reconnect around the damaged areas. There is a chance that some places may not reconnect and that's what we are facing right now with her gross motor skills. Her eyes are getting better, thanks to the patching, and she doesn't seem to mind it at all. We still patch her for 2 hours a day and she plays just as well either way. They know that her eye sight is really bad, but they can't tell exactly to what degree till we get her lazy eye fixed. Her ears hear perfectly and she follows sound and still gets startled really easily. I'm not sure if it's because her ears are making up where her eyes are lacking (I've heard of that before) or if her nerves are just very exposed to loud noises. Her head control is still very lacking. She is learning to hold it up for a few seconds while she's on her tummy or while we hold her under her arms...but most times she has the upper body control of like a 3 month old. This is still scaring me most days. This seems to be where I start to feel defeated. As other kids are learning to sit up and can at least hold their heads up...my child can do neither for more than a minute. What does this mean in the future? I have no idea. My true fears are the thoughts of a wheelchair or long-term needs for supporting devices. I also know that the longer we go without her being closer to target on development we are fighting a more difficult uphill battle. They are talking closer to 2 years before she will walk, but the longer it takes to get there the more likely that she will have severe learning and possibly physical problems for life. When we were pregnant and even the first 24 hours after she was born, we could have never assumed that this would be our prayers for our child. It's amazing how "normal" she seems. Maybe it's because this is my normal. As others start to say things like "she'll be fine", "don't worry, some kids develop late"...I know that there is a serious cause to the slowness of her "getting it". It's not only gross motor skill...Ella isn't isn't really bothered if we aren't there. She doesn't "play" with toys and there are a lot of small developmental traits that are listed that she hasn't even begun to "get". It's just a matter of when and what to do if it never happens...which is a likely possibility that most people won't address. Joe and I cry and talk about the "what ifs" I think mostly to prepare ourselves and to be honest when it's so hard for others (other than doctors) to be honest with what we are facing.
In light of all of that I am so thankful for so many things. Ella is home and not in the hospital. She laughs and smiles ALL day long!! Ella sleeps through the night...mostly. My husband loves and cherishes me...and shows me that daily. We have a family centered around God and Christ's sacrifice for us. A church family who has wrapped us in their arms and prays for us daily. Friends who check in on us
An extended family who is always there to lend a hand...or babysit. That we have our health and each other and the knowledge that there is something better than this after we die.
Thank you for being faithful to check up on us through this blog. Thank you for loving us enough to be concerned about Ella and how we are holding up. As I think about our friends, Matt and Ginny, and their loss of a child I am reminded that we have Ella to hold everyday...no matter her health condition...sometimes I just need to remind myself of the gifts God has given me.
Saturday, November 25, 2006
Wednesday, November 22, 2006
Thursday, November 16, 2006
I'm a whole half of a year old already!! Can you believe I've been home for 5 months...it seems like just yesterday I was saying goodbye to Nurse Dabney and Dr. Onley and heading out into the big world from the NICU. When I left the hospital I was so sick and so little...now I'm a big girl. I went to the doctor yesterday for my check up and they said I'm 18 lbs 9 oz and I'm 26 1/2 inches long...oh wow!! Guess all that formula and rice is sticking (if you saw my thighs you would believe I weighed more!!). It's been an interesting couple of days. Yesterday, after my mom took me to the doctor and then to my grandparents house, her car broke down. My Aunt Sara is letting us borrow her Jeep till we can figure out what happened to our car. Oh, I had a great session with my physical therapist on Tuesday. I am starting to pull my head up. It's a long road ahead still and I can't actually hold it up, but I'm learning to at least try. Where the average child walks between 9-15 months old, I'll probably be closer to 24 months, but I'm gonna try to do everything that every other little girl can do...I'm just going to take my time. I know this is all hard and exhausting for my parents, but they are handling everything really well.
Love you all very much,
Oh, here's a picture of me from the doctors office yesterday, I was bored waiting so I tried to eat all the paper on the table.
Monday, November 13, 2006
Wednesday, November 08, 2006
- that the patching goes well...it can be traumatizing for a child to have their "good" eye covered up, please ask God to make this a smooth ordeal for Ella (and mommy)
- that patching is effective...this is in God's timing, but that we start to see results quickly
- that surgery is not necessary...that the patching corrects the problems
- that Joe and I are patient and calm in the Lord's desires for Ella and what her testimony is through all of these struggles
Well, I'm waiting to hear this morning for confirmation, but it looks like I have kidneys stones. I realized on Sunday when I woke up that I wasn't feeling well and I ached really bad in my side. Went to church, worked in the nursery, went to Sunday School, even attended "big church" (saw Avery Poage dedicated)...but about 15 mins into the service I told Joe I was going to be sick if we didn't leave soon. That whole day I wrestled with a very painful right side. Finally I called my mom (bc they know everything) and called my doctor, both figured it was kidney stones. Monday I got up and went to my doctor and he ran some tests, still looked like stones. Then yesterday morning they did a CT scan of my abdomen and I should get the final results today. Needless to say it's been an interesting week. We had to move Ella's eye appointment from Monday to Tuesday. Joe had to go into work late on Tuesday so that he could be here when the physical therapist came since I was at the hospital. To top it all off...we leave for Vegas (WAHOOO) on Thursday because Joe's brother, Josh, is getting married to the lovely Wendy.
- that if in fact is is a kidney stone, that it pass without problems or pain
- Ella has "gunk" in her eye, that it not be an issue
- as sleep is light and stress is high, that no one in our family gets sick before or during this trip (Joe and I are already taking Airborne)
- that we can get Ella a flu shot before we leave (bc she already has a weaker immune system and is susceptible for pneumonia with flu)
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