Tuesday, July 21, 2009

Another busy day....

I feel out sorts because I am so busy this week. Work was been unrelenting, and I have had stuff to do on lunch, and after I am off for the day. I am currently taking a 10 minute break because I need to de-stress for a second.

Jude had a rather long seizure last night while we were visiting my dad and Kay. Kay said a nice prayer for Jude while he was going through the motions. Jude has a few spasms throughout the day, but he rarely has a long drawn out seizure like he used to. This one lasted about 15 minutes, and even though he did not yelp I could hear his breath become forceful with each crunch of his body. Jude's next neurologist appointment is in August so at that time we will discuss further medication options. I know it sounds like Jude's medication is always changing, but thus is the roller coaster we ride. I informed Kay, and Mike both about the bone marrow stem cell study I mentioned yesterday. Kay said she believes if any stem cell would show promise in neurological issues she would think it would be from Jude's own bone marrow. It's all scary, but fascinating. IF there was a possibility that the stem cells could help with his seizures, then that would be wonderful, but who knows.

So I mentioned I would share Jude's first bday party invites. I generally order invitations early because if people's schedules are as busy as mine, I figure they need plenty of advance notice. In addition I have several showers, a wedding, Jude's bday, and Ems bday coming up...whew. So here are his invites, hope you like them.
Front ~
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Back ~
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I would also like to share some pictures of Jude in therapy the last few days. It seems he is still making progress with his head control. His lovely therapist Leah brought Jude a brand new shiny bouncey ball to balance on. He loves his new ball!
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Jude is going to try out Gymboree music and play again tomorrow. I will be sure to let everyone know how he responds. I am going to meet Mike, and Jude at lunch time so I can participate with them.

One last thing I would like to share. Emily completed an interview with "Kids who inspire", and I would like to share it with you. http://www.kidswhoinspire.com/emilys-smile-boxes-interview
I hope you enjoy it, I did!

Also, I received my blood results from the hematologist that completed all the testing months ago. If you remember I was informed I had some sort of platelet disorder, but there has been no further testing since. I knew I would need my tests for the pediatric hematologist we are seeing for Jude, since she does in utero stroke research. When I received the paperwork I scanned through the results. Under my bleeding time it's marked not as high, not as an issue, but critical?!? That word seems a bit concerning, you would think they could use something less....dramatic. Anyway, I am trying to find out who I see to narrow down what the issue may be. I love my hematologist though, so I am confident I will find the right person to isolate what the problem is.

4 comments:

~Amy said...

LOVE Jude's invites.....so cute! So PROUD of sweet Emily!

Candace said...

Jenn,
What cute invites! I hope you find out some info about your bloodwork, soon.

Midwest Mommy said...

The invites are adorable! Hope you get some answers on the bloodwork soon. That word would scare me too.

Anonymous said...

Hi Jenn,
Jude looks like such a big boy on the bouncy ball. Where did our babies go?????
I love the invites and are excited about the promise of the stem cells.
Also, what a wonderful girl you have. Always amazing!!!!
Love,
Parker & Amy Hendrix
(Turtlemom & Turtletot)