Skip to main content

Wednesday, April 27th - Grump-o-saurus!

Ethan had his nine month check-up today with Dr. Smith. Everything looks great. My "little" man weighed in at 19 pounds and 10 ounces and was 29 inches long! Take that "Failure to Thrive"! We are so very proud and excited about how well he has been growing. Right now as it comes to growth he is an "average" 9 month old - which is very awesome! I remember so well when we were taking him to get weighed every week just to make sure that he was gaining weight! Not anymore!

Dr. Smith is going to make the referral for us to take Ethan to Shriner's Hospital in St. Louis. After visiting the orthopedic in Springfield last week we would feel more comfortable finding a more comprehensive team, plus there is the financial aspect of it all. Having kids is expensive - and kids with special needs are even more so! Dr. Smith was also glad to hear that next month Ethan will be getting his classes - we go May 12th to see Dr. Leuder at Children's Hospital in St. Louis for those and he was very excited that this summer while we are in Omaha, NE for the GFPD Family and Scientific Conference that Ethan will be seen by the PBD specialists - Dr. Raymond and Dr. Bravermann. Overall, it was a great appointment.

My biggest concern at the moment is Ethan's grumpiness. While I am so very thankful that he is sleeping through the night, he doesn't like to nap. Therefore, he is a very grumpy little boy most days. This isn't fun for him or me. I also believe that he may be teething, and although we can't see or feel anything in there, they may still be giving him so grief, which is another reason he might be such a gump-o-saurus most of the time.

Ethan is continuing to practice sitting, and he seems to be getting stronger each day. We are so very proud of him.

We have so much to be thankful for.

Comments

  1. If you need anything at all when you come to St. Louis, please let me know! Even if you have a minute to get together...I would love that too! We are praying for Ethan and your family!

    ReplyDelete
  2. I was a treated on a regular basis as patient at Shriner's Hospital from age 4-21 (when I was no longer a "child") for a metabolic disorder (a form of rickets). This is a wonderful hospital! I hope that the staff of nurses and doctors and the experiences you have there are as blessed as mine were.

    ReplyDelete

Post a Comment

Popular posts from this blog

"God Chooses Mom for Disabled Child" by Erma Bombeck

I don't think this is exactly how it works, but I had to share anyway. I believe with all my heart that God does not make mistakes, and although I will fully admit that it hurts my heart that any child is born (or develops) disabilities and/or life threatening illness, I know that God is sovereign and that He has a divine plan (even when we don't understand it!). I believe that God brought Jeff and I together and that He knew Ethan even as he was growing inside of me. While this is not the journey we would have dreamed of or chosen, and there are going to be times (and have been already) when we struggle, stumble and fall  it is our hope that in the end that we will bring glory and honor to the Lord.  God Chooses Mom for Disabled Child Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993 Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothe...

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders. Here are just a few of the faces of PBD. 

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum. More importantly though, here's a quick medical update: We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference. Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight.  So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the...