When I started this blog, it was for the obvious reason of keeping everyone up to date on the happenings in the Chatterton household. A secondary reason was as a mental/emotional outlet for myself. Once I write something down, I can deal with it so much better. So, for those of you who know me well, you will know that once this post is said and done, I will be a new person and be able to put things into perspective. I just need a reality check.
Okay, so Olivia has been "sick" for almost a month. She's either had a cold, been congested, or just not herself. When she's congested and eats, most of the time it results in vomit. I've been up to my elbows in puke for a month now. Our house smells. I smell. She smells. It's not pleasant. Rotten milk is the most disgusting smell in the entire world.
She doesn't sleep well, she doesn't eat well, she doesn't poop like she should, she doesn't play as much, she doesn't smile as much. I am so missing all of these things. We have spurts of normalcy, but they are few and far between.
Zac is going through a "busy season" at school, so is home for about 30 minutes a night if we are lucky.
Yesterday, I took Olivia in for her normal monthly labwork. The purpose of the labs is to check her liver function. One of her previous medications can cause severe liver damage, so we watch it closely. We are totally late on getting this done, but with her not feeling well, I wanted to give her a break from needles if possible. Anyway, I was feeling pretty good about the day. I called some family members and we all came to an agreement that she needed her milk thicker than what it already was. No problem. We were puke free for about 12 hours. Sure, she was drinking milk close to the consistency of pudding, but if she kept it down, who was I to complain?
I also decided to call our pediatrician to have her get me the results of the labwork. The labs are done for the cardiologist, but the pediatrician gets the results and looks at them a lot faster than the cardiologist. I was just curious about any type of infection or dehydration.
So, we are having this good day. I think we have it all figured out. Dr. L calls with the lab results and all her blood counts are really low. It's looking like she needs a blood transfusion. Dr. L will call and consult with the cardiologist. Riiinnnngggg... Dr. L calls back. It's the concensus among the doctors that Olivia see a hematologist to check everything out. Because she had a blood transfusion on Dec. 24, her levels shouldn't be so low and kids with Down syndrome are more likely to contract blood related illnesses, such as leukemia. However, Dr. L said she is NOT showing any signs to lead her believe she would have leukemia.
Okay, so Olivia has been "sick" for almost a month. She's either had a cold, been congested, or just not herself. When she's congested and eats, most of the time it results in vomit. I've been up to my elbows in puke for a month now. Our house smells. I smell. She smells. It's not pleasant. Rotten milk is the most disgusting smell in the entire world.
She doesn't sleep well, she doesn't eat well, she doesn't poop like she should, she doesn't play as much, she doesn't smile as much. I am so missing all of these things. We have spurts of normalcy, but they are few and far between.
Zac is going through a "busy season" at school, so is home for about 30 minutes a night if we are lucky.
Yesterday, I took Olivia in for her normal monthly labwork. The purpose of the labs is to check her liver function. One of her previous medications can cause severe liver damage, so we watch it closely. We are totally late on getting this done, but with her not feeling well, I wanted to give her a break from needles if possible. Anyway, I was feeling pretty good about the day. I called some family members and we all came to an agreement that she needed her milk thicker than what it already was. No problem. We were puke free for about 12 hours. Sure, she was drinking milk close to the consistency of pudding, but if she kept it down, who was I to complain?
I also decided to call our pediatrician to have her get me the results of the labwork. The labs are done for the cardiologist, but the pediatrician gets the results and looks at them a lot faster than the cardiologist. I was just curious about any type of infection or dehydration.
So, we are having this good day. I think we have it all figured out. Dr. L calls with the lab results and all her blood counts are really low. It's looking like she needs a blood transfusion. Dr. L will call and consult with the cardiologist. Riiinnnngggg... Dr. L calls back. It's the concensus among the doctors that Olivia see a hematologist to check everything out. Because she had a blood transfusion on Dec. 24, her levels shouldn't be so low and kids with Down syndrome are more likely to contract blood related illnesses, such as leukemia. However, Dr. L said she is NOT showing any signs to lead her believe she would have leukemia.
Cancer.
It's funny how a word can be so scary. Last week I was complaining because she wouldn't let me put her down. Now all I want to do is hold her. We were told Olivia had Down syndrome and didn't blink an eye. We were told she would have open heart surgery and didn't blink an eye. We were told her lungs may slowly shut down if she didn't respond to her medications and didn't blink an eye. How can one little word like that make a person lose it? I'm sure it's just because it's not something we know. There is very little cancer amongst our families.
Now, I realize we are totally jumping the gun on this. There is absolutely NO reason to believe that she may have leukemia. Even if she did, statistics show that Down's kids actually respond better to treatments and once they are in remission, apparently it never comes back. It's still scary.
Psalm 139:13, 14 – “For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
A welcome reason for all of this would be that she needs a swallow study done or has some sort of gastrointestinal thing going on and all her numbers are low because she throws up so much. I'm going to pray that my mind can stay focused on this possibility until we see the hematologist.
The cardiologist will call today with the appointment date/time. I'll let you all know when that will be.
So, as for me losing it, my mom will say I am entitled, my best friend will say it's about time, and my sister will be thankful for the break. See, she is the emotional basketcase (no offense, sis!) in the family and she usually does all the emotional stuff for everyone.
“And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”- Philippians 4:7
Update: after reading through this, I am already feeling at peace with all of this. The reason we never blinked an eye is because we put every ounce of Olivia in the Lord's hands from the day we found out she wouldn't make it into this world. I guess we were just doing so well, I had forgotten Who was in complete control here.
"See, I have engraved you on the palms of my hands;"
Isaiah 49:16
Have a GREAT day!
1 comments:
Wow...I'm so glad I just check your blog! I think the hardest thing in life is to realize what little control we have, particularly when it comes to our children. Of course your mother's heart is going to panic at the thought that something else could be wrong with precious Olivia. I think you're doing a pretty good job of trusting God and I think God welcomes our times of honesty when we tell him that it isn't fair, and we don't understand, and when we want him to just fix it. It's especially difficult to put your little girl in His hands. We will be praying that you get some answers and that Olivia's labs will improve. We'll pray for wisdom for you and Zac and for discernment for the doctors. Most importantly we'll be praying specifically that Olivia will start eating and sleeping better and that the Hematologist will find nothing wrong. Keep us posted!
Post a Comment