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!

Wednesday 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.

Shriner's 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.

-Colleen

Moving Forward

So the above photos are of Isaac in his new VW Bug swing and of him with his gorgeous Great Nana. If you look closely she has a tear in her eye as she is Sicilian and gets emotional easily, especially when she gets to hold her great grandson who she prays for everyday in her walk in closet. No kidding...if you can't find Nana anywhere, that's where she is!

So June the first we see the ENT Doctor to talk about the next scope for Isaac to see if he might be ready to get decannulated (have the trach removed). Two months ago I didn't believe my ears when she said it was even a remote possibility. when she originally placed the trach we asked "how long?" She said anywhere from a year to the rest of his life. I figured we would be looking at a very very long time. So I'm still very guarded as I know how these things can go and it just may not be the right time yet.

Having the trach removed would make life much easier for us as we could be more mobile with him and and he would be less fragile. He would also be at less risk for respiratory infection. On the other hand having it removed could potentially be risky and we could lose most, if not all of our help that we have had since Isaac was 4 months old. Isaac qualified for a program that would allow us home nursing due to his medical condition, but he mostly qualified due to the risk factor of having a trach.

I didn't realize this until talking to a few parent's with fragile kids who do not get this kind of help in the home. Most of them are expected to learn to become medical professionals overnight without very much help. I have been writing to congress about this issue. If it were not for the caregivers and the support we had during Isaac's first year of life I would not have been able to keep my head above water.

A lady at the hospital who was planning Isaac's discharge even told me one time that there were no nurses in the entire city because of a nursing shortage. She then in the same breath recommended counseling. Right after that I called up the first agency I found and...... sure enough they were scheduling nurses for us within a week! What if I had taken her word for it? Why was I told that? Why did I have to find the resources myself? How many other people are not given the proper resources when going home with these precious children?

That's when I officially became a mother of a special needs child....when I learned that you never ever take no for an answer!

So I'm praying for God's plan as I know his is perfect. If he has the trach removed it will be a celebration, but It will also be an adjustment for all of us.

Colleen

Back To Reality

This was our view from the room, it was spectacular! We had a very nice weekend with dining and watching unlimited cable with no interruptions. Of course I can't complain too much about my hot stone massage and the manicure. Sam was pretending that he didn't know what to get me for our anniversary, so I figured a weekend away was a present enough. Well he surprised me with a pretty saphire ring. What can I say, the man definately scored some points! I can't say enough about how blessed I am to have Sam as my husband throughout the challenges we have faced in our marriage the past 10 years, but mostly the past year and a half with the little guy. Well, back to reality! We saw the ENT doctor today for a rescheduled follow up for his hearing exam. Well much to our surprise the doctor said Isaac might have the trach removed this summer! Hold on, let me pinch myself, she said what? These are words I thought I would never hear. So please pray! They also mentioned that Isaac responds better to high frequency sounds than low frequency sounds like I suspected. That's why when I talk to him in my mickey mouse voice he gets so excited.

Isaac's little friend Gabby continues to have a hard time and had to go back to the hospital, but it sounds as if this stay will hopefully be short.

So What Comes Next?

Well it's just a lazy day here . My daughter Autumn went to teakwondo with her Dad this morning and now she's playing with her neighbor friends. Isaac's taking a long nap and I'm catching up on the laundry. Sam (my husband) is playing a new video game on his playstation 3. He's my other kid..LOL.

So what comes next for little Isaac? This Tuesday Isaac has a Neurology appointment and then on Friday, Feb. 6th he has a follow up appointment with the ENT. The follow up appointment is for the procedure he had done a couple of weeks ago to replace his right ear tube. I'm sure the doc will also want to talk to me about his hearing test too, which I'm kind-of not looking forward to. In March we will we will be seeing the Pulmonologist, Endocrinologist and the Opthalmologist. April is still looking uneventful other than a trip over to Shriners Hospital.

The Pulmonologist wants to start weaning Isaac off of his diuretic meds in the spring. He started taking this because he had severe edema last April that caused him to gain as much as 8 ounces a day of fluid! Since Isaac has a rare chromosome disorder and is a mystery, the doctors really couldn't figure out what was wrong with him, so they diagnosed him with Lymphedema. Well thank goodness the diuretic worked for him and he lost all of the fluid, poor little guy, looked like a water balloon for awhile. Lynn, my home nurse also gives him a head to toe massage everyday to keep the fluid circulating out of his body(yes, he is very spoiled.) Anyway, weaning him off these meds is going to be a process, but he will hopefully do just fine.

Isaac continues to do very well on his oxygen levels and is staying infection and pneumonia free, which is amazing for this time of year! I have been exploring the option of possibly transitioning him towards the spring and summer months from home therapy to attending the center at the Guild School. This would be great for Isaac, but especially good for me as it will be a good outlet for us. Isaac is limited to only 6 therapy sessions per month while recieving home therapy. This includes PT and ST. If we were able to attend the center he would have more options. This of course is only something I am considering and the doctors will have to say that Isaac is well enough or not too medically fragile to phase into this, So we will see what happens.

Have a Great Week! Love, Colleen

Welcoming 2009

Wow, time flies when you're having fun! I can't believe that Isaac will be 2 years old in April! For someone who was possibly not supposed to survive birth, well...we're doing pretty good. Many emotions flood me when I think about the celebration of this milestone. It is a celebration, but also bittersweet as he still is very medically fragile and has some major developmental delays. I have many goals for him this year now that we are not so much into survival mode. Don't get me wrong...we are still in survival mode, but we are not in the hospital as much...thank goodness! Last year my main goal for Isaac was to stay out of the hospital. Well we did a pretty good job in 2008. Isaac's most recent trip to the hospital was an outpatient procedure on Monday January 12th to have his right ear tube replaced and a sedated hearing exam done. The exam showed that Isaac has hearing loss in both ears. All we know is he lights up whenever we talk to him and he loves his Mama. The above photo is of my Dad with Isaac...we were celebrating a belated Christmas right after the New Year.