Thursday, July 9, 2009

So much accomplished

I am making progress today in the search for Jude's medical equipment. Thanks to Jocalyn I found a very nice man at Allumed. He is contacting Jude's therapist to schedule an appointment for a "fitting". We have a prescription for an adaptive stroller, a bath chair, and a specialized car seat. I am not sure we need the car seat, but Jude really has very limited neck control.

We also scheduled a hematologist appointment for Jude on 7/30. We are meeting with a in utero and childhood stroke specialist with Cooks. I never knew they had a hematologist that specialized in childhood strokes, but that is encouraging to hear! I think this is a great thing. I went through a time where I think it mattered what caused Jude's stroke, or brain bleed, but now I understand it's necessary. I also followed up with my hematologist to finally find out what this underlying platelet disorder is they discovered after the pregnancy. I guess we will finally know if Jude has the same issue, if he has factor V leiden, or anything else. Our main concern is to make sure Jude doesn't have the potential of suffering another bleed. Seeing how when my platelet problem was discovered the doctor called me a "bleeder", I think it's a high possibility Jude could have the same issue. In addition to the hematologist appointment we also set up a follow up opthamologist appointment for Jude. We know he has gray optic nerves from lack of oxygen which has caused visual impairment, but we don't know the extent of the impairment yet. We have noticed Jude is looking at us more, objects more, and is very interested in bright lights.

In addition to all the above I talked with the Division for the Blind yesterday, and they will be following up on Jude's case. They can provide additional help as needed. Also, the nutritionist said she really feels Jude will only need her attention on an "as need basis", so we will not be setting up a follow up with her right now. So to say the least we have gotten a lot accomplished this week. I would also like to report that Jude is back on schedule regarding eating, and sleeping. When I got home yesterday he had taken over 20 ounces, and eaten vegetables with rice. He did wake up with a seizure this morning reminding us that we are still on the roller coaster. His seizure was quiet, but it was a cluster and lasted about ten minutes. The strange thing is he can smile through these clusters, which is a new development.

I would like to take a minute to share one of the reasons why I have written this blog every single day since April of 2008. Why I share personal highs and lows, and information on Jude. Below is a quote from Hope's mom at

" this blog is for other mummies who may find themselves walking an unfamiliar, unchosen path. I was and still am privelidged enough to have followed a blog about a baby called jude. Jude is a few months older than Honk, but with similar diagnosis and prognosis. His mom blogged dàily; the highs and lows. Like Jude, hope was blessed with a good start, and at about 3 months began having seizures. If it wasn't for his blog, I may not have even recognised honk's seizures. I feel that although the path Im on is new, I'm slightly better prepared for the journey thanks to jude's mum. Perhaps then I can be the one to show someone else the way! By the way, though I said this wasn't a path I chose, if someone said they'd show me how to go back to the start and chose another path, I wouldn't! "

I am honored, and glad I could help in some way.

Time to go back to work, have a great day!


Katy said...

Sounds you and I are in same boat--checking out equipment! Keep us posted, I'd love to hear what kinds of stuff you end up with.

Caroline said...

Ah, it's true though .Really glad we 'met' xxx

jocalyn said...

Is your hematologist Dr. Torres? She is ours...and told us she was interested in participating in more stroke research. Also, we found a great "blood taker" at Cooks, so if you want a recommendation on that....he will probably have to have lots and lots of blood drawn!! Take care!

Midwest Mommy said...

That is awesome! Put a smile on my face.