What a week... I started with just two little appointments that turned into a full week. Monday was quiet but then the week really got started. On Tuesday and Thursday Amber started E-stem therapy for swallowing, I am excited to introduce breastmilk next week. We are just dipping her pacifier in it but it's something. She doesn't like having the little leads on her neck but that's what helps stimulate her muscles on her throat so we go. On Monday I got a call from the Endocrinologist for a Wednesday appointment. The appointment was at 830am, they started at 9am. They had to start an IV to draw blood for testing and for medicine administration. The blood had to be drawn every hour for three hours. As they were poking her, I said my poor baby she is getting poked tomorrow for her first set of vaccines. I am so glad that God put that thought in my head. They said, oh no you should not be doing any vaccines until we get results from this test. If her adrinal gland is off and she needs hormonal supplements she will not be able to handle the vaccine shots, she could be back in the hospital. They decided to do the labs in house to get the results faster for me, and after 4 hours there we went home.
On Thursday, at her pediatrician's office we hadn't heard any of the lab results so we decided to postpone the vaccines... as I was walking out the room, I got the call. Thank you Lord, all is well with her hormones no supplements needed... now little baby got poked again, 3 shots / 5 vaccines. Dr. Comulada said to do Tylenol for 24 hours to avoid any problems.
On Saturday, we had another eye appointment, this time it was in his Pasadena office not at CHLA. It was so much better, no waiting, no crowds, no parking problems, and best of all lots of hands to help... it was a family trip. Dr. Song says her eyes are great, continue the patch on left eye and drops on right eye until we see him again in two months. The surgery to replace the lenses in her eyes would more than likely happen when she is 9 years old.
While we were in Pasadena, now with a few vaccines in her, we decided to have lunch at the Old Spaghetti Factory... what Weight Watchers... she was pretty good with one diaper change and one little fuzzy time from wanting to sleep and then slept the whole time we were there.
I am sad to say I am running out of breastmilk so the GI doctor said to start mixing formula with breastmilk until is just formula. This is causing her to poop less so we will see where we go from here. Please no constipation...
We had another family walk, she is loving the outdoors, should I be worried? She is going to be my party girl, hanging out with everyone and out all the time.
This week we continue swallow therapy twice a week and an appointment with cardiology on Friday. Oh and Amber made it to church on Saturday too, Pastor John gave her a blessing. It was such a great feeling to be able to do that. I can't wait for her baptism. As always, thank you for all your prayers and positive thoughts... I pray that Amber continues to grow, gets rid of the gasses, starts to swallow so she can eat from her mouth, that the genetics doctor have some answers, that neurology can tell us more about her brain and that regional center can get someone to start her physical therapy soon.
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