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!

New HFKOs, Brand-Name Keppra, and a Flooded Car.... YEAH

Today was quite the day!

It started with me waking up to David describing how he drove to get an iced coffee but ended up stranded in a parking lot instead.  It was pouring down rain and had been for hours.  There was major flooding and the roads where terrible.  He was in the grocery store parking lot, but couldn't see well because it was 4:30 am and dark, and accidently went into a deep drainage area in the parking lot.  His car stalled.  There was smoke.  He couldn't get it to start back up.  He tried to push it by himself but it wasn't budging, so he locked it up, turned on his hazard lights, left it there, and walked home.  It was not in a parking spot and was kind of in the middle of the driving lane, but there was nothing else he could do.  My sweet hubby didn't want to make me come get him at 4:30 in the morning, since I would have to drag the kids out of bed, and we live pretty close to the store, so he just walked.  I am not sure why he didn't call my dad, but apparently he enjoyed the walk, and as an added bonus, he got a shower too!  After that he was crazy busy at work and couldn't leave while I was still there, and then we had to leave for an appointment downtown, so it sat for a while.  We were afraid it was going to get towed so later in the day our very kind neighbor, Jerry, took David to his car and helped him push it out of the way and in to a parking spot.  After I got home we called a tow truck to take it to our mechanic.  Unfortunately water got in the motor so we are praying there is minimal damage.

 

 

On the plus side, Conner loved "building dams" after the rain died down.

 



 

 

Today both girls had an appointment with Ron at Hanger to get their HKFOs fitting them.  The downtown area was flooded, and of course that is where we were headed, so my dad came with us to make sure we were safe.  I am pretty spoiled with an amazing dad who loves us very much!!  It was also nice to have an extra set of hands since I had so much cargo to haul.  It turns out Madi needed brand new HKFOs so she got casted for them.  We should get the new HKFOs in about a week.  She wasn't sure if she wanted "a zillion Scooby-Doo's" or just plain pink, but decided on just plain pink.  She did a great job being patient while Ron casted her.

 

 

(Ron was a great sport and let Madi measure him :))

 

(Conner was a great sport as well and baby-sat Madi's new tiger for her while she got casted (yes, that is a glove she drew on ;))

 

 

 

Next up came Ramya.  The great news is she has GROWN and her HKFOs finally needed an adjustment!  Yeah!  He made them 1/2 inch taller and also widened the back portion a bit.  She did great with waiting as well and we were able to take them home fitting, which was wonderful.

 

 

 

On the way home we stopped at Urban Bakery and the kids got gluten-free vegan donuts.  They had been really good for the appointment, which was a few hours long, so I wanted to surprise them and get them a little treat.  My dad stayed in the car with them and I ran in and picked out a few.  I got my dad a few cupcakes too, because there has to be some perk for helping me wrangle 3 kids.  Ramya didn't want hers (I will never understand how a kid can say no to sweets!  I even got her favorite kind... vanilla with icing), but Conner and Madi gobbled them down very happily. 

 

 

 

 

We were also able to pick up Madi's brand-name Keppra today... YEAH!!  I am really praying this helps with her rashes.  There's some back-story on getting the medication, but it was not too bad!!  On Thursday we headed out to see The Rugrats Live with the kiddos.  I had forgotten my phone but decided not to go back for it because I thought it was too late in the day for calls from the doctor.  Of course I came home and realized I had missed a call from our neurologist at 7:45.  I was bummed!!  I called the next day, Friday, but couldn't get ahold of him.  His nurse said he had made notes in the file stating he had called our pharmacy and they were working towards getting the brand-name keppra approved.  The nurse suggested we talk to the pharmacy to verify.  The pharmacy said they did not have a record of this, but talked to George, the main pharmacist who thankfully loves our kiddos, and always remembers us, and he got right on getting it approved and processed.  He called the neurologist office, called me back when he couldn't get through to ask me the best way to get ahold of our neurologist, called again his office again, and then left a message with Dr. Condie's nurse.  He called me back after that and told me he hadn't been able to reach them but would order the brand-name for Madi anyway and figure the rest out later.  Thankfully the nurse called him back shortly after that and sent him a prescription for brand-name keppra, so he ran it through insurance to make sure he didn't need to call them as well, and then called us back and let us know it was all taken care of and our prescription would be ready Monday.  I'm thankful it all worked out and getting it was relatively painless!!

 

 

Next on this week's to-do list is picking up Ramya's glasses, setting up a hearing evaluation, calling to see where we stand with getting Madi oxygen to use during seizures, getting some blood tests done (the MTHFR mutation test for me, and food (IgG and IgE) for Ramya and Conner), homeschool co-op, OT, PT, and the play Charolette's Web.  Oh, and I am getting a teeth cleaning.  It will all be worth it though because we go out of town next week for vacation... woooo hooo!