I figure I will make this one a public entry. For those who don’t know, we have (within the last month or two) found out that Rachel has a very significant vision problem that is actively degenerating her retina and her optic nerve is very affected. We have done lots of blood tests to find out the source but ultimately she needs to have an ERG test completed for a definitive answer. The ERG was scheduled for a few weeks ago but it was too much for her and we could barely even “drop her” (with the different kinds of eye drops required) so we are awaiting a miracle (LOL) in the schedule of Dr Ann Fulton at Children’s Hospital who can do an ERG under general anesthesia. We have upgraded her IEP for next year and as a part of that, Rachel is (RIGHT NOW!!!) undergoing a functional vision assessment at school by a Teacher of the Visually Impaired. The vision appears to be a symptom of something much bigger and we are working with a geneticist who is looking for specific stuff (including some chromosome deletions) that might be responsible for a great deal of things. All of this takes time.
Julie and Rachel will be out of school in about 2 weeks and my Juliebean is GRADUATING PRESCHOOL next week in preparation for Kindergarten! The girls both have their school concerts on Thursday so expect to see some pictures up here at the end of the week! Rachel is now 9 and Juliebean turned 5 in March.
The boys are doing well and are the best of friends. London is into playing Indiana Jones Legos and in the sandbox with Julie and Boston is a professional laptop destroyer and amateur escape artist. They are healthy and obnoxious and eating me into the poor house. Just as it should be.
I have lots of doctor appointments lined up for Rachel and hopefully this summer will bring us some answers so we can know how to best apply our efforts. The girls won’t be doing summer school (at my request) so I will be trying to think of some fun summer ideas. We did join the zoo last week so I will certainly want to get my money’s worth (LOL).
Most importantly I look forward to watch them just be kids.
John had nose and throat surgery on Thursday so I’ve been playing nursemaid with the help of the kids. He is on the mend now but I am sure is drooling at the thought of steak right now even though he is nowhere near ready for that yet. I’m sure it will be another week before he is better. The nose is healing faster than the throat (he had his uvula out and his nose fixed). No more snoring!!
Drop me a comment if you’re out there…Read More
Life isn’t going to slow down anytime soon. Rather than send Rachel to Ophthalmologist #3, I let her go to the musical that the High School kids are putting on. I just don’t want to put her through anymore tests until we reach someone that can actually perform the ERG.
One of my teeth is infected again and I wound up at the dentist yesterday with ALL 4 of my children in tow. Imagine having a dental examination and xrays while you have a 9, 5, 3 and 2 year with you. Seriously. The day before I had the four of them for cleanings and that was bad enough. I ended up getting a script for antibiotics as we are already working on the treatment plan and will extract the problem teeth next month. All this to say that while I am in the Dentist’s chair, the phone rings and it was Children’s Hospital letting me know that Rachel has just been set-up with an appointment with a Geneticist next Thursday!!!!!!!!! Very excited.
I’m not so excited about the fact that John is having surgery on Thursday and all the stress that comes with tight scheduling. I’m glad that he is having his nose and uvula taken care of but wish that it were on a different day. We will make it work.
This weekend I promised Rachel a Star Wars marathon. She’ll watch 1, 2, 3 on Saturday and 4, 5, 6 on Sunday. I need to figure out what room to have it in because of the light factor and I must come up with some snacks.
These kids are going to bed early tonight because Mommy needs a mental break. Hopefully my husband will come home soon (he is at a service call).Read More
SHOULD HAVE WON!!!!!!
Also, I had two more teeth fixed today. One more cavity appointment and then we move to extractions (6). 3 week from extractions we make the mold for the partial and 2 weeks after that I get fitted with some new teeth. So excited!Read More