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Friday, May 13, 2016

Appointments, Visitors, and Fun

I am behind on blogging, as usual, but I'm trying to be consistent ;).  Ok, not really, I just operate slightly behind, and thankfully it doesn't bother me too much.

A few weeks back we attended an event for the Tucson chapter of the Arizona Spina Bifida Association at a local gymnastics gym.  The kids had a LOT of fun.  I plan to get them on the wait list for future classes.  An OT leads frequent classes for kiddos with disabilities and is really great with the girls.  Conner has been wanting to take gymnastics too, so it works out great!

 Conner got to take his turn and have an appointment with a vision specialist.  He was pretty excited actually.  I had all the kiddos evaluated in Phoenix, just to make sure that not only their vision was fine, but also their tracking and the such, and Conner showed some gray areas where the doctor thought he may eventually need some vision therapy.  His eyes have a hard time converging when he's reading.  It's not major, but seems to be effecting his reading a bit.  I have noticed as the print has gotten smaller, he closes one eye when he reads, sometimes skips lines, and still reverses some letters. I took him to get evaluated again at a different place in Tucson an they decided that he would benefit from glasses to magnify his work whenever he is doing school work or watching TV.  He also is going to do 8 sessions of vision therapy.  He is super excited for his glasses and very happily wears them.

Madi's new neurologist wanted to do a sleep deprived EEG to see how she is doing and possibly switch up her medication since she's still having a decent amount of seizures, and her seizures are hard to stop.  He wanted me to give her about half the sleep she normally gets.  At first she thought staying up and watching movies with me sounded amazing, but she is my girl who loves her sleep, and the novelty wore off quickly.  She did it, though, and I was very proud of her! She did well during the EEG and had the nurses all giggling, of course.  The doctor said her patterns have remained the same.  She has a lot of mis-firings, most stemming from the left-hand side.  We discussed new medication for her and I told him my concerns with picking a new one.  She only has one functioning kidney, so it's very important to have her on something that will not cause any kidney damage.  She is also terrified of blood draws, so I wanted her on something that did not require frequent level checks.  We decided to try lamictal since it works well with focal seizures but also helps generalized seizures.  There is a risk she may have a rash/reaction, so we are taking our time and getting her up to the full dosage very slowly, over a span of 4 weeks.  At that time we will see how she is doing and hopefully slowly wean her off the Keppra.  The keppra makes her moody, so I am hoping the lamictal helps her there, though I'll take a moody girl with a happy kidney over anything that may harm her kidneys any day!  After the EEG I took her out to eat and she chose Panda Express since we do not usually eat there (gluten sensitivities) .  She was pretty excited!  I also got a coffee (because momma was sleep deprived too) and she convinced the barista to give her a cup of whip cream with chocolate on top.  This is a rare treat for her (due to her dairy sensitivities), plus they gave her a huge cup, so she was super excited! 

(She looks grumpy but really wasn't.  She was in a good mood but was just tired)

Last week we had visitors and really enjoyed our time with them!  Our friends Darlene and Samuel from homeschool co-op in Phoenix came by to visit on their way to see family.  They brought us a pretty lavender plant and some gluten-free yummies and the kids had a lot of fun playing.  It means a lot to the kiddos to see a familiar face!  My parents also came in for a night for Mother's Day.  We had planned to stay in Tucson since we have to be in Phoenix again at the end of May, so they decided to come here.  They hadn't been here since the end of last year and the kids were really excited they visited.  

Deena had her follow up with the orthopedic surgeon and everything looks great!  Her rod is in perfectly and her bone is healing nicely.  He said if she felt good she could take off her splint, which made her VERY excited.  We kept it to put back on if she has any pain, but so far she says she feels great.  I'm trying to keep her going a little bit slower than normal while it continues to heal, but she's a feisty little cutie and not always great at that.  

Other than that, the girls are liking our new occupational therapist.  She seems pretty proactive and works well with the girls.  This week she brought fun dress up clothes to practice dressing and the girls loved it!  I think I have speech therapy lined up as well, though finding physical therapy is proving to be a challenge.

Oh, and this morning we woke up to cookies at the front door from my dad (AKA papa) and then found that all our butterflies had emerged from their chrysalises so we got to release them.  The kiddos were pretty happy!  David got me an in-home massage for Mother's Day and she came today, so I had a pretty good day too.  Tomorrow David's brother, Mark, and his family are coming to Tucson for a visit.  We are really looking forward to spending time with them and are excited for more visitors. 

I think that's all for now!  I hope everyone has an amazing weekend!

1 comment:

Catherine said...

It's great to hear how you're settling in and things are falling into place. Have a great weekend with your family!