So, I asked about Goldie's platelets and was told it was probably a side effect of the anemia and her numbers are no where near what they consider high. I got a scrip for her 2 year labs. A couple of my readers pointed out that I may want to have her zinc levels checked. I'm going to look into that and may stop at the ped and have them add it on. Goldie has an appointment at the DS Clinic in May, so I'll be getting her blood drawn sometime between now and then. I drive 1/2 an hour to the satellite of Children's Hospital because they are the only people I trust to stick my baby.
I also got a scrip for Goldie's Sure Steps and a referral to an ENT. Her left ear needs cleaned and the pediatrician wants it double checked for fluid. I had her hearing checked in December and the results were normal. But, I was sitting in the booth with her and she did not respond to all the sounds on her left side.
Next on the list is that she can't seem to sleep for more than 1-2 hours, so I'd like to see what the ENT thinks of that. She doesn't sound like she has sleep apnea, but I need to rule it out so I can figure out what's going on. Another possibility is that because of her low vision, she's not getting enough light in through her eyes to properly regulate her sleep cycle.
No shots, we vaccinate selectively, so she is current on the ones that we get.
I just realized I forgot to ask about something, mostly because its become our normal. When Goldie wakes up she is very floppy. It almost looks like she's drunk. We can't let her walk and if she is sitting she will repeatedly fall over. It freaks my mom out, but I thought it was caused by her low tone. Right?
And because I feel like posting a picture, here's how my kids sort laundry. Where's Goldie?
This is her after waking up from a nap. She fell forward and went back to sleep.
6 comments:
First- adorable photo! She blends right in!
Second- I am so glad you have supportive Peds! What a difference that must make. I brought up Sean's sleep disturbances with my ENT when he was 2 (at a tubes follow up) and said "I know it is standard practice to do a sleep study at age 3, but I wondered if this was something we could talk about now." He was on the ball and said there was no reason to wait till 3 if I already had a restless sleeper.
We had a sleep study done and found that he was having mild apnea (30 episodes an hour!!) and then went back to the ENT. From there we moved foward to T & A removal, Sean was 2 1/2 by then. It still took Sean several months of recovery before he fell into a better sleep pattern.
At age 4 1/2, he wakes occassionally at night, but is easy to fall back to sleep (as long as he has a parent there.) My older son have sleep issues too and didn't sttn until age 4. He also sleeps best with a parent.
Oh, Sean is pretty slow to go in the a.m. Very snuggly and not very active the first 30 mins or sow.
That is great to have a good peds! You are lucky! Do you see dr. Chi for ENT? we loved him and he was so good and very kind! The peds Noah used to see there moved away two years ago and he was wonderful. When Noah was 4 months old he held a support group meeting for parents with a child that had ds and had two families come in to speak to us with adult child with ds.
:) I do the exact same thing, drive half hour to Adam's ped. when there is one 5 min. away!!
LOL, picture reminds me of those "I spy books" Goldie just blends in! :)
Our next step is a sleep study. She has been potty trained for almost a year, and still can not make it through the noght. I'm pretty sure her sleep cycles are off, making it impossible to not pee at night. Hopefully, it's as simple as a A& T removal/
I definitely recommend the sleep study, also. We had Aidan's done when he was 2-1/2, and then we did the adenoid removal. Good luck!
Great reaading
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