Wednesday, May 27, 2009

Shriner's and upcoming ENT appointment

I just realized how many posts I have for the month of May...... Whew, it's been a busy month!

nurse Lynn and I went to Shriner's Hospital for x-rays of Isaac's hips and spine. They found a noticeable curve in his spine or scoliosis. He was born with a butterfly disc, but up until now I have not seen any obvious curve in the x-rays. At this point because he is still growing, there is no plan to perform any kind of surgery, but we will follow up with them in 6 months. We are going to try improving his posture because he is more prone to one side when we try sitting him up or when he's in a chair. This could possibly make things worse in the long run.

While we were there I also requested
x-rays of his hands and his legs. When Isaac was born we thought it was cute that he was always pointing. We later discovered that the finger just doesn't bend! There were no abnormalities in the x-rays showing missing or deformed bones/joints. I'm still planning on seeing a hand specialist in the future. Being unable to bend his fingers properly interferes greatly with sign language, but right now any kind of surgeries are too premature for his growing body. The legs were x-rayed because Isaac's therapist wants to have him fitted for a stander soon and she wanted to make sure that his leg bones were in good shape, in which they were.

may have to close their doors in our area due to lack of funding and this will be determined this summer. This could greatly affect our children's hospital and several families who use Shriner's. Please pray for this!

While we're on the subject of praying, Monday (June the 1st) we have an appointment with the ENT doctor, which will determine when to schedule an outpatient scope of his airway. This may determine if Isaac is possibly ready for decannulation (having the trach removed) in the near future. How confident am I that this is our summer?

I'm doubtful.

At our last Pulmonology
appointment they put in his medical notes that due to his recent respiratory illness, they are not recommending a trach removal this summer.

Where do I stand with this?

I'm not a doctor, but I think we will just know when it's the right time. I don't want it removed if there is a huge risk factor, but it would also be nice for us have some normalcy in our lives. So I'm asking that you will just pray for peace and contentment for us with whatever comes our way this summer.



Amber said...

Gracie has her next echo on June 1st! I'll definitely remember your little one on that day.

Junior said...

Such a happy boy, love the smiles.
We will be keeping you guys in our prayers.

Cjengo said...

Oh I just love seeing him in his Jumper! How cute!

Alicia said...

Wow, your plate is full. Lots of things to think about. I am always praying for you guys and I will continue to pray for the specific things you mentioned. Boy do I know the "trach stays in/trach comes out" game. It can be so heart wrenching to wonder when that day will come. I am as bad as anyone when it comes to giving these worries to God. I pray for your peace through this.

What a happy guy Isaac is. That is such a blessing! He is so cute!

Have a great weekend!

Michelle said...

I love the look on his face in that pic!! Lots going on for you right now and always I'm sure. Praying for you....know right where you are with decann....