Tuesday was our last visit. Claire is to 8 ml at 2.5 mg concentrate. This is the last dose increase at this concentrate. Next week it will be 1ml at 25mg. Sounds like a big jump, but the math works out right. I say all that not knowing if we will even increase next week. Claire is reacting at each dose. Yesterday it was a swollen itchy lip and stomach cramps. This morning it was diarrhea, and cramps. Not a virus because it's different and the timing. Hard to explain. Anyway, spoke to her allergist and he wants to know how tomorrow goes, that will decide if we go back to 6ml or stay the course at 8ml.
This week my brother and sister (in law) rode with us. SO MUCH FUN. I laughed the whole time. Not just at Britny's expense, but a little!! I so appreciate my family's willingness to help in anyway possible. I know this isn't hard to most, it's a trip to Dallas, but for me (us) it is huge. The 3 hours there I am so stressed she will react, the way home I am wondering if this was the right decision. God has led us so far. He will continue, the doors have all been opened for us, so we will continue.
Even as I type I am reminded of a childhood friend who is dealing with her daughter fighting Cystic Fibrosis. She is working towards getting a double lung transplant. He daughter is 11 I think, too young to deal with anything remotely like this. I pray for her daily, we are dealing with food and this friend must feel like she has the world on her shoulders. I ask anyone reading to pray for her as well. My friends name is Amanda, I'm not sure if she would want her whole name here. I'll ask, maybe put her go fund me link here.
I'm cutting this one short, not too much to say. Hopefully more to say after next weeks increase! Thank you again for your prayers.
Thursday, February 19, 2015
Thursday, February 12, 2015
6ml
I am so sorry for the late post. It's been 2 weeks of busy. We had to skip last week because Claire had a little sinus infection going on. They will not up her dose if she is the slightest bit sick. She is more likely to have a reaction with any type of illness. So we went Tuesday.
Tuesday I believe will be our new day of choice, Claire gets 3 hours of school, I can cram in 4 hours of work and we make it home at bedtime and ready for Wednesday. It's exhausting, but it doesn't take over an entire day of school/work like Fridays do. Anyway, we headed off to Dallas Tuesday for her first increase in 2 weeks. My sister Bethany was with us, Adam had bids to get out. Bethany was a huge help with Claire, and keeping me awake for the day. We get to Medical City, totally uneventful. No wrong turns, one way streets, tickets, nothing! I was super proud. I'm the wife that's not allowed out after dark because Adam is fairly positive I would get lost.
While we are there we see a friend we made from our LONG day, Dezi. He's darling. I like the mom, she's super sweet and easy to talk to. We made a date for next Tuesday, same time, same place. The drs bumped Claire up to 6ml @ 2.5mg concentrate. wahoo! Should be about 4 more liquid dose increases and them we are to the capsules that you empty into food. Not so much looking forward to that!
You know, as ecstatic as I am to have my Claire safe from peanuts in just a few short months, it is a really odd feeling. I've been a peanut allergy mom for 5 years, I don't remember parenting when our lives didn't revolve around this. Of course we will be Epi-Pen carriers for the rest of her life, but the daily/minute to minute fear will be gone. It's almost like losing your identity. All I know is protecting her. Obviously I protect my son in the normal "mama" way. But with Claire it is painfully different. She and I share a different relationship, it's almost a life line. I have to admit, it's a life line that goes both ways. Before her I didn't know what being a true mama was. Cole was so easy. Slept all night at 6 weeks, and in a big boy bed at 2. Potty trained at 3, ate solid food from the get go. He was like a pretend baby. God knew I couldn't handle a challenge at 23. I was doggy paddling and I needed a baby that I could love and not need to do much else. Claire came as a challenge from day one, we have learned and grown together. Adam and Cole have been our constant balance. This will be a huge change for them too. I will have to shift my mothering I think. It will be more freeing for sure, but terrifying to say the least. It would be nice to assume this is a completely normal feeling, but I'm really doubting others feel this way.
On a lighter note, Claire tried jumping on a soccer ball Sunday afternoon and landed on her wrist. Green stick fracture on her left arm. She will only wear the cast/splint for 2 weeks. That child has whined about her arm itching every other breath. Thank God it's only 2 weeks. A friend of mine (Crystal)'s daughter broke both bones in her arm yesterday. That baby will be in a cast for a while. Poor thing. The best part was tonight at Jujitsu Cole had a kid crunch down on his finger. AWESOME. Adam called, I picked him up and he cried, and cried and cried. Ok, do I go home and get him calmed down? Do I send him to school tomorrow telling him he's fine and suck it up? It's his right ring finger, which is a pretty important finger for writing. So, off to Velocity for an x-ray. I know there's not much to do for a broken finger, but a splint or something to protect it maybe. When the dr came in and looked at Cole's tear stained face and then over to me holding Claire with a cast on her arm - all she could do was laugh. I assured her that calling Child Protective Services was completely not needed. But it sure does look suspicious - 2 casts in 5 days. Luckily it's not a broken bone, just a deep bruise.
I'm not 100% sure what I'm supposed to write about on here, but I found myself today wanting to type. I guess get everything swimming in my head out in the open. Please note that I do not always proof read every word I type, so go easy on the grammar. And, I am not a writer, by any stretch of the imagination. If it sounds like babbling, it's because that's how it comes out - sorry.
Tuesday I believe will be our new day of choice, Claire gets 3 hours of school, I can cram in 4 hours of work and we make it home at bedtime and ready for Wednesday. It's exhausting, but it doesn't take over an entire day of school/work like Fridays do. Anyway, we headed off to Dallas Tuesday for her first increase in 2 weeks. My sister Bethany was with us, Adam had bids to get out. Bethany was a huge help with Claire, and keeping me awake for the day. We get to Medical City, totally uneventful. No wrong turns, one way streets, tickets, nothing! I was super proud. I'm the wife that's not allowed out after dark because Adam is fairly positive I would get lost.
While we are there we see a friend we made from our LONG day, Dezi. He's darling. I like the mom, she's super sweet and easy to talk to. We made a date for next Tuesday, same time, same place. The drs bumped Claire up to 6ml @ 2.5mg concentrate. wahoo! Should be about 4 more liquid dose increases and them we are to the capsules that you empty into food. Not so much looking forward to that!
You know, as ecstatic as I am to have my Claire safe from peanuts in just a few short months, it is a really odd feeling. I've been a peanut allergy mom for 5 years, I don't remember parenting when our lives didn't revolve around this. Of course we will be Epi-Pen carriers for the rest of her life, but the daily/minute to minute fear will be gone. It's almost like losing your identity. All I know is protecting her. Obviously I protect my son in the normal "mama" way. But with Claire it is painfully different. She and I share a different relationship, it's almost a life line. I have to admit, it's a life line that goes both ways. Before her I didn't know what being a true mama was. Cole was so easy. Slept all night at 6 weeks, and in a big boy bed at 2. Potty trained at 3, ate solid food from the get go. He was like a pretend baby. God knew I couldn't handle a challenge at 23. I was doggy paddling and I needed a baby that I could love and not need to do much else. Claire came as a challenge from day one, we have learned and grown together. Adam and Cole have been our constant balance. This will be a huge change for them too. I will have to shift my mothering I think. It will be more freeing for sure, but terrifying to say the least. It would be nice to assume this is a completely normal feeling, but I'm really doubting others feel this way.
On a lighter note, Claire tried jumping on a soccer ball Sunday afternoon and landed on her wrist. Green stick fracture on her left arm. She will only wear the cast/splint for 2 weeks. That child has whined about her arm itching every other breath. Thank God it's only 2 weeks. A friend of mine (Crystal)'s daughter broke both bones in her arm yesterday. That baby will be in a cast for a while. Poor thing. The best part was tonight at Jujitsu Cole had a kid crunch down on his finger. AWESOME. Adam called, I picked him up and he cried, and cried and cried. Ok, do I go home and get him calmed down? Do I send him to school tomorrow telling him he's fine and suck it up? It's his right ring finger, which is a pretty important finger for writing. So, off to Velocity for an x-ray. I know there's not much to do for a broken finger, but a splint or something to protect it maybe. When the dr came in and looked at Cole's tear stained face and then over to me holding Claire with a cast on her arm - all she could do was laugh. I assured her that calling Child Protective Services was completely not needed. But it sure does look suspicious - 2 casts in 5 days. Luckily it's not a broken bone, just a deep bruise.
I'm not 100% sure what I'm supposed to write about on here, but I found myself today wanting to type. I guess get everything swimming in my head out in the open. Please note that I do not always proof read every word I type, so go easy on the grammar. And, I am not a writer, by any stretch of the imagination. If it sounds like babbling, it's because that's how it comes out - sorry.
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