Sunday, September 27, 2009
Neglect
Its been quite a while since I last posted and I apologize. I am sorry I have neglected anyone that would take the time to read Lucy's blog. Unfortunately there just hasn't been much to report. Things are the same and as we wait for her October appointment I just feel more and more like we are spinning our wheels. At this point Lucy is STILL battling the mouth sores on a daily basis even with the huge dose of medication shes taking each day. She also has now had a major flare up of the Raynaud's phenomenon. All together it makes me worried for Lu and what could be going on, I hate sitting here and doing nothing.
Saturday, September 19, 2009
Thursday, September 17, 2009
Sour Grapes
This is what Lucy looked like the other day. Her lips broke out in hives and burst. Definitely painful. I had stopped giving her her meds since her stomach issues came about around the time we upgraded her dosage from an adult dose to 1 and a 1/2 times an adult dose. After pulling them her allergies seemed to stay at bay and with her gut on the fritz I was concerned about starting the meds up again if it wasn't truly necessary. But, this past week Lucy became impossible to deal with, trantrumming nonstop and acting out of control- a side effect that typically results when her skin begins to "crawl". The other day her lips broke out and I figured out that we needed to go back on the meds regardless of her gut issues. I started her up again yesterday and as of today she is about 80% improved in the allergy department, thank God. Her mood is back to normal and all is calm. She is still taking in less than 4 oz per feeding, but everything is good as long as we stick to that ritual.
I haven't posted on the blog lately since I have just been feeling negative as anything and that is not what I started this blog for- a gripe and moan session for myself. I have had a hard time keeping my chin up since Lucy's latest downward turn. Like magic, my normally optimistic outlook has turned into nothing but negative thinking even when its not necessary. And really, who wants to share that attitude with anyone? I will spare you.
Friday, September 11, 2009
Starting School
We started homeschool this week. Its been an adventure! haha!
Its going well, I am learning what works best and what doesn't through a trial and error process. The biggest challenge has been juggling both the kids while trying to get something DONE. With Lucy not feeling well shes really a handful and trying to get a feel for homeschool at the same time, makes it a challenge. But we are moving right along.
I feel confident we have made the right choice. I can already see the unique accommodations that I can make for Zachary's special needs. For example, I wanted to get Zachary practicing his handwriting, which he hates but struggles with. The first line I was insistent that he sit still in order to focus and work quietly. But by the second line the silence had evolved into him singing "Twinkle Twinkle Little Star" over and over and over. The difference in his work when he was quiet vs when he was singing and bee popping in his seat was HUGE. His work was actually BETTER when he was allowed to "multi-task". The ADD mind is quite busy and works best when kept that way I guess.
Zachary started his swimming lessons today and did REALLY well. The school we take him to has this specific block of time reserved for homeschoolers at a discounted price. I got to sit and chit chat with other homeschool parents and get advice, while Zachary swam his heart out in the pool. He has really come around with his swimming skills this year and I was impressed!
Lucy is still hanging in there. I can tell she just does not feel well, but is pushing her way through it.
Its going well, I am learning what works best and what doesn't through a trial and error process. The biggest challenge has been juggling both the kids while trying to get something DONE. With Lucy not feeling well shes really a handful and trying to get a feel for homeschool at the same time, makes it a challenge. But we are moving right along.
I feel confident we have made the right choice. I can already see the unique accommodations that I can make for Zachary's special needs. For example, I wanted to get Zachary practicing his handwriting, which he hates but struggles with. The first line I was insistent that he sit still in order to focus and work quietly. But by the second line the silence had evolved into him singing "Twinkle Twinkle Little Star" over and over and over. The difference in his work when he was quiet vs when he was singing and bee popping in his seat was HUGE. His work was actually BETTER when he was allowed to "multi-task". The ADD mind is quite busy and works best when kept that way I guess.
Zachary started his swimming lessons today and did REALLY well. The school we take him to has this specific block of time reserved for homeschoolers at a discounted price. I got to sit and chit chat with other homeschool parents and get advice, while Zachary swam his heart out in the pool. He has really come around with his swimming skills this year and I was impressed!
Lucy is still hanging in there. I can tell she just does not feel well, but is pushing her way through it.
Wednesday, September 9, 2009
Nothing New
Lucy is hanging in there. Fortunately we have managed to get down a routine that has stopped the diarrhea- slightly less than 4 ounces per feeding no closer than 2.5 hours. Shes still complaining of periodic belly pain, but it doesn't appear to be crippling. She was up a couple times Monday night, but seemed to sleep well last night.
I keep looking at the calendar and trying to will the days to go faster so we can see our new GI on October 9th.
I keep looking at the calendar and trying to will the days to go faster so we can see our new GI on October 9th.
Friday, September 4, 2009
And somehow I feel better
I took Lu in to see Dr B, our pediatrician, today. Shes a great doctor because not only does she seem to know everything and always turn out right, but she has a way of easing your mind when you come in worried.
She gave Lu the once over and ruled out a viral issue as the cause of her diarrhea. She sat down and we discussed where to go from here. Dr B was quite honest and said that in her mind the next step is to get Lucy a G-tube. If Lucy has a G-tube we can run feedings at night at a slow rate so that she can even "eat" while she sleeps. If we have to work within the limit of no more than 4 ounces every two hours Lucy will have to eat when she is sleeping in order to sustain growth. A G-tube makes this possible.
However, its not like you just stop off at the hospital and have them insert a port into your child's stomach. First, we need to find ourselves a new GI specialist and then go from there. Fortunately I have gotten a number of recommendations from people for a Dr G down in the city. I called this afternoon and got the earliest appointment which is for Oct 9th. So until then we wait, and we hope in the meantime that Lucy will continue to tolerate at least 4 ounces every 2 hours.
I'd like to say this hadn't really knocked me down a bit, but it did. I had gotten comfortable with the idea Lucy wouldn't have food and as long as she could be happy and healthy without it I can be happy- but it doesn't seem as if that is even an option at the moment. Shes formula-only mere months from her third birthday, things look bleak, and now she is still sick. Its a hard pill to swallow. I am adjusting to this "failure" but it still hurts.
We've been blessed enough to have quite a few family and friends offering distraction and support over the last day or two, which has been great and we can't thank them enough. So for now, I will hunker down and settle into this new "norm" while we anxiously await answers or solutions.
She gave Lu the once over and ruled out a viral issue as the cause of her diarrhea. She sat down and we discussed where to go from here. Dr B was quite honest and said that in her mind the next step is to get Lucy a G-tube. If Lucy has a G-tube we can run feedings at night at a slow rate so that she can even "eat" while she sleeps. If we have to work within the limit of no more than 4 ounces every two hours Lucy will have to eat when she is sleeping in order to sustain growth. A G-tube makes this possible.
However, its not like you just stop off at the hospital and have them insert a port into your child's stomach. First, we need to find ourselves a new GI specialist and then go from there. Fortunately I have gotten a number of recommendations from people for a Dr G down in the city. I called this afternoon and got the earliest appointment which is for Oct 9th. So until then we wait, and we hope in the meantime that Lucy will continue to tolerate at least 4 ounces every 2 hours.
I'd like to say this hadn't really knocked me down a bit, but it did. I had gotten comfortable with the idea Lucy wouldn't have food and as long as she could be happy and healthy without it I can be happy- but it doesn't seem as if that is even an option at the moment. Shes formula-only mere months from her third birthday, things look bleak, and now she is still sick. Its a hard pill to swallow. I am adjusting to this "failure" but it still hurts.
We've been blessed enough to have quite a few family and friends offering distraction and support over the last day or two, which has been great and we can't thank them enough. So for now, I will hunker down and settle into this new "norm" while we anxiously await answers or solutions.
Thats a can of worms I dont want to open
Yesterday's changes didn't go well at all. We adjusted the concentration of Lucy's formula just slightly and that produced multiple diarrhea blowouts. We were at my mom and dad's all day and by the end of the day she had a huge welt on her behind. There was no denying she wasn't tolerating the change. I drove home the whole hour and half spinning with all the horrible thoughts of what exactly this could all mean for Lucy. It certainly doesn't mean anything good.
I wanted to update even though I am not in a position to talk about it just yet. This development of pain and formula intolerance over the last few weeks has really knocked the wind out of me. I know that things could be far worse, its not like she is dying, but in terms of her disease's course, this is all just bad bad news.
I wanted to update even though I am not in a position to talk about it just yet. This development of pain and formula intolerance over the last few weeks has really knocked the wind out of me. I know that things could be far worse, its not like she is dying, but in terms of her disease's course, this is all just bad bad news.
Wednesday, September 2, 2009
Busy busy
I know, I havent posted in a while. We have been busy and stressed as usual and I just havent felt like posting.
Lucy is still not tolerating full feedings. She cant seem to take in more than 4 ounces every 2 hours. When this schedule is combined with the number of hours she is sleeping and unable to eat, Lucy cant possibly consume enough formula. I spoke with her doctor today and we are going to start to try and concentrate her feedings a little more so that per ounce there are more calories and nutrition. Hopefully she will tolerate this so that she can stay on her growth curve.
Lucy is still not tolerating full feedings. She cant seem to take in more than 4 ounces every 2 hours. When this schedule is combined with the number of hours she is sleeping and unable to eat, Lucy cant possibly consume enough formula. I spoke with her doctor today and we are going to start to try and concentrate her feedings a little more so that per ounce there are more calories and nutrition. Hopefully she will tolerate this so that she can stay on her growth curve.
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