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Wednesday, May 15, 2013

Busy, busy, busy (did I say busy?!?!?!?!?)

Life has been busy, but good!  This is Madi's last week of preschool for the year.  She will have one more year after this, then she will homeschool with Conner and Ramya.  We have about 3 weeks left of homeschooling, then will do only partial summer days.  My goal is to do a lot of fun experiments and the such this summer. 

Last week we picked up Ramya's first pair of KAFOs and she is very, very proud of them!  Ron, our go-to-guy that we love at Hanger, made them for her with love!

 
 
When we picked up her new leg braces, we dropped of Madi's HKFOs, which were not fitting well again (that girl won't stop growing!!!).  After Madi's neurology appointment (more to come on that in a second) today, we picked up her HKFOs, so now both the girls have properly-fitting leg braces.  Double the trouble around here!  Ramya's strength and energy is low still, so we are slowly working on building up.  Today she spent about 30 minutes in the learning tower with them on "helping" me make dinner, which is the longest she's gone yet!!  She did start twisting her legs and buckling from her muscles getting tired, but she really made it a long time!  We've still only gotten about 5 minutes in the walker, but I know every day she will get stronger and stronger!
 
 
Last week (or maybe the week before... time just blurs together right now!), all the kiddos got their teeth cleaned.  I had Conner and Madi go first so Ramya could watch, then it was Ramya's turn.  We held hands and she did great!  None of the kids have cavities... YEAH!
 
 
(conner took this one :))
 
 
 
Today was neurology for Madi.  She is going to try a new seizure medication, since the Trileptal doesn't seem to be keeping her seizures away.  We are hoping this one will do the trick for her.  I just hate, hate, hate that she has them!  And, of course, I feel bad for letting her get the MMR vaccine, since they didn't start until she got it.  I was just really wanting us all to get to go to India together, but that is not how things were meant to be.  I know that may not be the reason she started getting them, but it's just quite a coincidence that she had never once in her life had a seizure until she got the vaccine, and then 4 days later, she started and hasn't stopped.  The CDC website lists ongoing seizures as a "rare" side effect of the vaccine.  Considering she's already neurologically challenged, I think the vaccine was enough to tip her over the edge and begin the seizures.  Anyhow, hopefully this new medication will do the trick and we can get her seizures under control.  She was stuttering quite a bit more after our last big cluster of seizures and hospital stay, but that seems to have gone down again, thank God!  She is still coughing a lot more randomly and has thrown up randomly quite a bit more.  They are hoping the medication change will fix this, but if not, she may need a swallow study to make sure she's not aspirating on her food.  The pediatrician also wanted to get an MRI, due to the continuation of seizures, but the neurologist does not think it's necessary, so we shall see what we do there.
 
Next Tuesday Madi goes in for a VCUG, a renal ulrasound, and then gets to pick up her new wheelchair.  Then, the following week, Ramya needs an exploratory surgery to see what is going on with her urinary system, figure out what and how they did surgery in India, and try and clean up her granulation tissue on her belly button that itches her all the time.  He'll also try to figure out if her muscles are tight enough, or if bulking her up will help keep her urine from leaking out.  Her bladder holds a decent amount, but she leaks very easily, so he thinks it may be a muscle tightness issue.
 
Attachment is going well.  Ramya seems to be getting more confident.  Her fine motor skills and coordination is getting better, and her English is coming along very well!  She wants to be held a decent amount, but also loves to be independent and play.  She loves getting and giving hugs and kisses, and we probably hear "I love you" about 20 times a day, which is wonderful!  We are a very affectionate family, so she hears it often as well :).  We are working on telling the truth and getting attention appropriately/ in appropraite amounts/ at appropriate times, etc..  We are playing games (thanks Amy for the suggestion!) to work on taking turns and waiting our turn.  We are also really trying to teach both Ramya and Madi about strangers.  They both think it's ok to touch and talk to anyone they see.  Madi will ask random strangers for hugs, and Ramya will try and get attention and will touch anyone close to her.  I think I'm going to have to be tougher and firmer with the girls to help them get it.  I really think either would just go with a random stranger if they were asked, which is not ok at all! 
 


I think that's it for now!  Please keep the girls in your prayers as they go through testing, and as Ramya has surgery.  We'll have a busy few weeks, but I am thankful that the girls are followed so closely and get such great medical care!!  I am also thankful that, amongst it all, God gives us many moments of peace and laughter. 

5 comments:

Amanda McMahon said...

So much going on - Hopefully it all calms down soon so you have maybe a whole 5 days in a row with no appointments and just time as a family :)

SpinaBifida.net said...

Jamie it looks like Madi is making some amazing progress! 30 minutes is an amazing feat and I'm sure she will only improve!

Mark Veprek said...

Jamie, I'm so glad you have this blog and keep us updated on your kids! I am super jealous that none of them have cavities! I am so impressed with all of them. They are all such wonderful little people!

The World of Vineet said...

Hi Jamie, Love going through your blog:) Maybe its the 'Indian' link,so I follow Ramya's story eagerly - You are the Fairy Godmother in her 'Fairytale' :) God Bless you ALL...much love...
Jacqueline

Justin matwecuk said...

Wow your're busier then me xD

well im sick with a cold, (since last thursday D:) so i haven't gone out yet. So i've just been on the computer playing games like no tomorrow haha. THats good your kids have no cavities. I had to get one filled ^_^; good thing i've stopped growing so i don't have to get leg braces all the time, only when they wear out or getting a little "flexable" ^^