August 22nd, 2008

For those keeping up to date with Sarah's progress, I have posted a recent e-mail from Jennifer.

Again THANK YOU to everyone for continuing your thoughts and prayers.

 

Jennifer's Note:

Hi,

  Well, I wanted to update everyone on how our little Sarah is doing.  We met with the pediatric neurologist, Dr. DeRoos, this morning here in Marquette.  He came up from Grand Rapids for a specialty clinic at Marquette General.  It was nice to not have to travel downstate again this time. :)

  The last two EEGs have shown some improvement, but unfortunately not the marked improvement he was hoping for.  So, he is doubling the dose of ACTH for the next two weeks.  Because of the significant side effects of the ACTH, Dr. DeRoos doesn't want her to be on it any longer than 8 weeks total.  We are seeing one of the side effects crop up this week with a significant weight gain.  Sarah was 20 lbs., 15 oz. last Friday, and was 21 lbs., 14.4 oz. today!  Since she's already been on the ACTH 6 weeks, we are going to keep her on it for 2 more weeks, and reevaluate at that point.

  When she has her next EEG in 2 weeks, if it is not as improved as Dr. DeRoos had hoped, then we may have to switch to an oral prednisone or just keep her on the Zonisamide that she's on, and hope it helps.  He said there is another medication that works well for this disorder, but it is not available in the United States.  We'd have to get it from Canada, and we're not sure the insurance would cover it.  So, we're really hoping it won't have to come to that.

  I had also been reading more info online about Infantile Spasms at a website made by parents with children who have been diagnosed with this disorder.  The site is ... www.infantilespasms.com if you're interested in reading more about it.  Anyway, many of the the things I've read say that there is over a 50% chance of a child diagnosed with IS to have a seizure disorder later in life.  I was shocked by this percentage, and so I asked Dr. DeRoos about it.  He said it is probably just over 50%, and if we can't get the IS controlled soon, that percentage goes up.

  We also had the social worker put in a referral for Early On, the Early Intervention Program here.  They will call soon to set up an evaluation for Sarah.  Dr. DeRoos feels her motor skills are definately behind, and it wouldn't hurt to have her evaluated.  Since we completely believe in the effects of early intervention, we are hoping to get help soon.

  So, although this isn't exactly what we wanted to hear, some improvement is better than no improvement or more regression.  Please continue to keep us in your thoughts and prayers.  It has really helped IMMENSELY to know we are surrounded by all those positive thoughts! :)

  Hope all of you are doing well, and hope to hear from you soon!

The Bleckiner Family

 
August 14th, 2008

Hello everyone that checks our website for updates.  Matt and I have gotten Maria's Baptism scheduled.  Inivitations will be in the mail in the next couple of weeks.  Here is some of the information.  Maria will be submersed like Emma was, but St. Paul's does require diapers during emersion.  Maria likes the water a lot more than Emma did/does.  I think she is going to be our little fish. 

"I have held thee
in the palm of mine hand."
Isaiah 51:16
Please join us as our daughter

Maria Ann


is Baptized on November 9th, 2008
during the 11:30 a.m. Mass
St. Paul Catholic Church

Matthew and Amanda Caminiti

Luncheon to follow at the Caminiti Household

RSVP by October 26th, 2008

 
August 12th, 2008
Last night we visited Emma's school.  They had an Open House so the parents could bring the kids to meet the teacher and to know where they will be the first day of school.  Emma's teacher and teacher assistant are very nice.  Emma gave the teacher's assistant a hug when we got there and when we left.  The curriculum for her for the school year is the Ten Commandments.  Matt and I were both happy with everything.  They even have a little tiny potty in the room’s restroom.  The teachers won’t be using it.  There are 8 boys and only 3 girls in her class.  Emma’s birthday is the first birthday of the school year.  So as we figured our little girl will probably be one of the oldest in her class the whole way through school.
 
August 6th, 2008

Last night we took Emma to see The Wiggles again for the second time.  The first time we took her to see them she was only 9 months old.  She loved them at that young age very much.  They could calm her down when nothing else would.  She had so much fun last night.  She was dancing, jumping, singing and smiling the whole night long.  We brought a rose for Dorothy, but they didn't come close enough to collect it.  However, Murray walked right by us.  Emma was pretty excited about that.  Maria was really good through the whole thing and actually watched part of the time.




 
July 31st, 2008

Started working on the new website.  Matt and I are making some headway.  He is working on the CSS as I try to create content.

One of the first decisions we had to make was what template we wanted to use.  I found the one we are using on http://www.christiantemplatesonline.com/.  It is a wedding template but we both liked it and didn't find anything else after finding this one that we liked.  There are a few modifications that we wanted to make and we are slowly but surely getting through them.

I talked to Jennifer today to see how little Sarah Bleckiner is doing.  She had another EEG on Friday of last week and there was no change either positive and negative.  The neurologist at the Children's Hospital in Grand Rapids, MI also ordered an MRI and genetic testing to see if there was something causing her episodes.  All of those test came back negative as well, which they said was a good thing.  The neurologist believes that after 4 weeks of her medicine she should be okay.  Sarah has to get injections every day.  Every week they do a blood draw and they are now monitoring her weight.  Every two weeks she has to have an EEG to see if there is any improvement. 

For all those that have said prayers for Sarah THANK YOU VERY MUCH from the entire family.

 
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