I had a progress meeting with Rachel's therapists last week. We've been doing therapy twice a week for about two months now. She is progressing well with the therapy. I was a little bit surprised because I was told she is likely on the autism spectrum. She was evaluted for autism once before almost two years ago, but not diagnosed. However, after talking about it and then reviewing the checklist, she could very well have an autism spectrum disorder. So they want me to get another evaulation done.
She has a referral now at Kaiser to get evaluated. Our first evaluation was done through the county program, so this will be the first time our medical insurance tests her. As usual with Kaiser, I'm not holding my breath that we'll get anywhere to get them to pay for any services. I'm kind of okay with that since we've been dealing with this for so long.
Another thing we discussed during the therapy meeting is getting Rachel on a feeding tube as soon as possible. Her GI doctor was going to wait a couple of months and see if Rach gained any weight back or started eating. Then she stopped accepting her iron supplement in apple juice.... which I was only able to get into her a few times anyway. Her health is quickly declining and has been over the past six months. I never wanted to consider a g-tube, but she simply cannot keep going the way that she is. The GI doctor and the therapists both think getting her a g-tube now is needed. Usually kids start with an NG tube but since we are also dealing with sensory issues, a tube in her nose wouldn't fly! I'm supposed to hear from the scheduling nurse in the next couple of days and we should be getting the g-tube within 1-3 weeks. I'm thankful that she will be admitted to the hospital for a couple of days so that we can see how she takes it and see how she takes the feedings. I will, of course, be staying with her the whole time. I am really nervous about she's going to react to this, and I'm scared that I have to learn how to do all of her feedings and use the pumps and such. I know they won't discharge us until we know what we're doing though. It's just scary. I never thought she'd go this long without eating. I always thought she'd just start eating at least something. So yeah, a feeding tube isn't the ideal solution but I'm excited to be able to get some actual real nutrition into my little girl. I also can't help but be mad that Kaiser will pay for a g-tube that includes a hospital stay, but they say she doesn't need feeding therapy. It's ridiculous!
After we get settled in with the g-tube and such, we are going to start feeding therapy 4-5 times per week. Still not sure how the financial part of this will all work out, but we're going to make it happen. We're only going to do the daily therapy for about three weeks and then go back to twice per week depending on how things are going. If she gets an autism diagnosis, our insurance would be required to pay for more services. It would be nice but I'm not holding out hope for that. We've already been disappointed too many times.
Just had to get this all out tonight. Oh and I have to write down what Rachel said to me today. The girls and I were dancing around the living room while listening to the Little Mermaid soundtrack. Rach asked me for a milk bottle so I said.. "okay, just a minute." But then I was distracted when Sophia started dancing with me. So then Rachel said, " mommy, you go dance to the kitchen and get my milk." She totally cracked me up!
Monday, June 17, 2013
Monday, June 3, 2013
Returning to blog land
How did I let half of a year go by without at least posting something? I really do want to get back into it, so I am going to just write some random things to catch my blog up to speed.
Where did we leave off?
I had surgery at the end of January. It was rough and included being admitted to the hospital.... but the biopsy came back negative and it was not lymphoma. I did have some partial facial paralysis for a few months but I am happy to say that my smile and my left eye and eyebrow both look normal again. I was really starting to wonder there for a while though. I'm not too thrilled that my incision is still very visible on my neck but I suppose that will get better with more time. I'm just happy I am cancer free!
Rachel has been denied for feeding therapy from Kaiser Permanente three times now. The past 6 months have been the most stressful that we've had. She lost five pounds because her diet became even more limited. She cut out the Costco organic animal crackers and she quickly lost weight from it. We're now seeing a GI doctor and a dietician. Her pediatrician had suggested getting a feeding tube but the GI doctor is having us try an appetite stimulant and some more time instead. I'm so mad at Kaiser that I can't see straight. Every time we see a different doctor or therapist, we're told something different than the time before. I'm so sick of being told that SPD isn't a medical condition so they can't do anything for her. Her health is suffering. Kaiser Permanente's motto is "thrive." What a load of crap! They will consider paying for a feeding tube but not feeding therapy since she isn't your typical case. It's becoming increasingly frustrating and I'm at my wit's end.
So we were forced to pay for therapy on our own. I have been wanting to take her to the Star Center in Colorado for over a year now. But then I found two therapists locally (well, an hour away) who have gone through the Star Center's mentorship program and they are awesome therapists. So we've been going to sensory based OT and feeding therapy for a couple of months now. Rachel has made some good progress. She even took a bite of a chewy sugar cookie and ate a peice a couple of weeks ago... without throwing up or gagging. So this is progress, and I feel like we have finally found the right therapy and therapists for her. I just couldn't justify paying to take her to the Star Center or being away from Morgan and Sophia for that long. It's not completely off of my radar just yet. I'm just hopeful that the therapists locally can help her. So far, I am so impressed with them. It's frustrating that we have to pay out of pocket for it, but it is what it is, and we're working it out.
School is out for summer. We had the girls' IEP meetings back in February when they turned 4. They will all stay in their current preschool/therapy programs until they start Kindergarten. I am very thankful that Sophia and Morgan's teacher is keeping them in her program. She didn't have to qualify them, but she did. Rachel will be in her current program as well. We are very blessed and all three girls have amazing teachers.
Wow.. how did it get to be midnight already? See... this is why I never blog. Anyway, just wanted to post a small update. I'm hoping to get back into posting more often. We have a busy summer planned and I'd like to document it.
Where did we leave off?
I had surgery at the end of January. It was rough and included being admitted to the hospital.... but the biopsy came back negative and it was not lymphoma. I did have some partial facial paralysis for a few months but I am happy to say that my smile and my left eye and eyebrow both look normal again. I was really starting to wonder there for a while though. I'm not too thrilled that my incision is still very visible on my neck but I suppose that will get better with more time. I'm just happy I am cancer free!
Rachel has been denied for feeding therapy from Kaiser Permanente three times now. The past 6 months have been the most stressful that we've had. She lost five pounds because her diet became even more limited. She cut out the Costco organic animal crackers and she quickly lost weight from it. We're now seeing a GI doctor and a dietician. Her pediatrician had suggested getting a feeding tube but the GI doctor is having us try an appetite stimulant and some more time instead. I'm so mad at Kaiser that I can't see straight. Every time we see a different doctor or therapist, we're told something different than the time before. I'm so sick of being told that SPD isn't a medical condition so they can't do anything for her. Her health is suffering. Kaiser Permanente's motto is "thrive." What a load of crap! They will consider paying for a feeding tube but not feeding therapy since she isn't your typical case. It's becoming increasingly frustrating and I'm at my wit's end.
So we were forced to pay for therapy on our own. I have been wanting to take her to the Star Center in Colorado for over a year now. But then I found two therapists locally (well, an hour away) who have gone through the Star Center's mentorship program and they are awesome therapists. So we've been going to sensory based OT and feeding therapy for a couple of months now. Rachel has made some good progress. She even took a bite of a chewy sugar cookie and ate a peice a couple of weeks ago... without throwing up or gagging. So this is progress, and I feel like we have finally found the right therapy and therapists for her. I just couldn't justify paying to take her to the Star Center or being away from Morgan and Sophia for that long. It's not completely off of my radar just yet. I'm just hopeful that the therapists locally can help her. So far, I am so impressed with them. It's frustrating that we have to pay out of pocket for it, but it is what it is, and we're working it out.
School is out for summer. We had the girls' IEP meetings back in February when they turned 4. They will all stay in their current preschool/therapy programs until they start Kindergarten. I am very thankful that Sophia and Morgan's teacher is keeping them in her program. She didn't have to qualify them, but she did. Rachel will be in her current program as well. We are very blessed and all three girls have amazing teachers.
Wow.. how did it get to be midnight already? See... this is why I never blog. Anyway, just wanted to post a small update. I'm hoping to get back into posting more often. We have a busy summer planned and I'd like to document it.
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