Boys And Their Toys

So I was trying to find a cause and effect game for Isaac that we could hook up to his big screen TV. I finally found this vsmile baby toy. It's great! Even better, I found it at Wally World. There are a few games to chose from where he can see the colors and shapes change on the big screen when he presses any button. Isaac's sister was excited to see that her little brother is playing video games now just like the rest of the family....LOL.
Today we went to the neurologist and there were no changes made to his medications. He has a very mild seizure disorder. In fact he only had some when he was a little infant. Still the neurologist doesn't want to rock the boat, so he has kept him on the same amount of Keppra since he was 7 months old. I was interested in learning more about the stiff fingers/joints and whether it was neuro related. The doc said a big word that I had never heard of before called Arthrogryposis. What a mouthful! I guess I have some researching to do.

Last weekend it was 100 degrees, but we managed to stay cool by spending a day on the lake swimming and cruising around on my Dad's boat. We had a nice time and got some much needed rest and relaxation.

Well, have a great rest of the week everyone!

-Colleen

The Boy In The Bubble?

Autumn with her awesome teacher Mrs. Holbrook
Hello all, so I thought I would type up an update while I have some time. We have good news and we all like hear good news don't we? Isaac had an in home assessment done through the state today and they decided to keep him at his current home nursing hours. Phew! I was sweating that one with all of the budget cuts that are going around. On a low note, Isaac's immunoglobulin levels are still very low. Are we packing our bags for Seattle? Heck no! The dr's office suggested that for right now we see how Isaac does over the coarse of the next 6 months infection wise and then from there we have the option of seeing a specialist in Seattle if we choose to take the next step, which would be IVIG therapy. He doesn't have "the boy in the bubble" syndrome, but he does have an immunodeficiency, which just means he is more susceptible than the average person to infections and viruses.

Autumn's last day of school is this Wednesday and she's so sad to be leaving Concordia. The above pic is of her and her AWESOME teacher Mrs. Holbrook. I can't say enough about the school and what a blessing it's been while adjusting to life with Isaac the past 2 years. It's right behind our house and when Isaac was at his most fragile moments that first year a teacher would walk her home. Next year Autumn will be attending NW christian schools, which will be a nice transition for her as we know families there from when she attended back in the preschool days.

Well that is all I have to report for now. Isaac is as healthy and happy as HE can possibly be for HIM today so we will take it!

-Colleen

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

Two Steps Back

So my Husband and Daughter are staying at a condo on the beach in south Texas right now. What am I doing? Isaac is teething which makes life super fun and to top it off, he has the runs from the antibiotics he's been on. I know, I know, I really know how to have a screeeaming good time. I'm happy for them, especially for my daughter as she is having a great time with her Dad visiting family down there. They are fishing and swimming in the hot Texas sun.

I sure miss them. ):

Isaac saw the pulmonologist and he's not totally out of the woods yet, so he's on another round of those fun antibiotics. I will just have to stock up on rash creams! I'm a little discouraged, to say the least about the oxygen. We were down to room air and then the little stinker gets sick! I just feel like we are always taking two steps back just when we are starting to move forward. Anyhow, next week he is getting another immune test done since the last one said his levels were low. If this one is low again, they said we may have to do further testing in Seattle! This could determine whether he may need intravenous immunoglobulin I hope this isn't the case. As you know, taking him to the nearest doctor is an ordeal, but Seattle?

-Colleen

A Little Ray Of Sunshine

The sun is finally out and I can't wait until I can take this boy out into the world to enjoy the sights and smells! For his birthday I'm going to buy him a swing for our backyard swing set. I'm sure he will enjoy that.

A few people were praying for my Dad's surgery on his arm last week. He is doing real well, although he is going a little stir crazy as he won't be back to work until June the 1st. He's also eager to start golfing again (his favorite sport), but it will be awhile! We are looking forward to having them over the 18th to celebrate Isaac, my Grandpa and my Stepmother Jean's birthday as they are all in April.

Isaac got tested last week on his immunoglobulin levels. (yes it's a mouthful, click on it to see web MD). It is low and in fact lower than when they tested him at only 7 months old, which doesn't make much sense at all! I'm not going to worry my little head over this until they do further testing.

Well I have 6 kids in my backyard right now so I better go see what's going on!

Isaac's Birthday & A Strange Phase I Went Through

Only 13 more days until Isaac’s 2^nd birthday! I can’t believe it! I’d like to say I have big plans, but I’m actually waiting to see how my Dad is feeling after having surgery on his arm yesterday. He fell on black ice while getting out of his delivery truck 2 weeks ago and fractured his arm. (ouch!)

I will assure you that Isaac will be getting tons of kisses on those sweet cheeks from his Mama for being such a trooper the past 2 years! It hasn’t been easy for him, but he somehow manages to still be the happiest kid on the block. When I’m feeling sorry for myself I just look at him and see how happy he is all the time in spite of his limitations. He’s my inspiration!

Although I’m looking forward to birthday festivities I keep thinking about this strange phase I went through right after his first birthday.

I tried to convince myself right after finding out Isaac’s diagnoses that even though it was hard, I would just “get over it” within a couple of weeks. As if I was Superwoman or something I spent the first year trying to stay strong, live in the moment and survive. The house was busy with nurses and we were in and out of the hospital. There was no time to dwell on emotions.

At the 1 year mark I went into this phase I like to call “where in the world did that come from?” Reality hit me like a brick and I had to sort through some unprepared emotions. Was this a bad thing? No, it was a great thing! Although it took me a couple of months to get out of my “fog” I came out better, stronger and more able to accept Isaac’s disability.

Maybe I'll visit another phase after his 2nd birthday, maybe I won't, but I know now that as much as I would like to call myself Superwoman, I'm not and I have to let myself go into that "fog" once and awhile and know it's OK!

But seriously, who could be sad for long with that sweet face!

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