It's a bird......It's a plane......It's Super Sister

Autumn's book she made about Isaac called "The Cute Boy"

This is Autumn, Isaac's amazing older sister (in case you didn't already know that). You wouldn't know it by looking at this sweet girl dressed in pink that at 7 years old she already has a red belt in taekwondo. That's right, if anyone tries to cross her path or mess with her special needs brother she may have to break out the moves!

Taekwondo is not only good for self-defense, but is also very good exercise and has really helped improve her ability to focus. Autumn has always struggled a little with her attention span, so this has helped her (and us) a great deal. Believe it or not this is not just a boy sport. There are several girls in her class. Before she can go up a rank in taekwondo we have to fill out a home report by giving her a score ranging from 1-3 on how well she cleaned her room, did her homework etc. Well one of the questions says "is she nice to her sibling?" Autumn always gets a 1+ without a doubt for being such a good sister to Isaac!

Autumn has been through quite an adjustment the past 2 years. She was an only child for 5 1/2 years and had our undivided attention. She was the star of the show. Then along came Isaac, after 4 long months in the NICU he came home with a house full of nurses, medical equipment and stressed out parents. You get the picture? Even though our life had been turned upside down, Sam and I agreed to try our best at making life as normal as possible for her by allowing her to enjoy just being a kid. This includes allowing the neighbor friends to come over (as long as they are well) or going to an after school activity with her Dad such as taekwondo.

Autumn LOVES her brother and likes to make him smile at her. It's so cute to see his face light up when she sings him the ABC song. She doesn't stress out like the rest of us over his disabilities or health problems, Autumn just looks at him as a cute boy who just needs some extra help. She views him through the eyes of a child. While we were visiting Isaac in the hospital a few weeks ago she wanted something do so I gave her some paper and markers to play with and 10 minutes later she wrote a short story called "The Cute Boy."

"The Cute Boy"

Once upon a time there was a one year old little boy named Isaac, and there was his sister who loved him.

Her name was Autumn.

But the mother also loved him.

He had a thing that most people didn't know about. It was called a...........

Chromosome disorder.

Some might make fun of him, but it's nothing to laugh about.

He couldn't walk, talk, eat, pick up things very well.

But one day he got sick when he was two and the girl was sad.

But a few weeks later he was well and the girl was happy!

The End.

Isn't she cute? I will be updating in a couple days on how the ENT appointment went and when the big scope is going to be.

-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

A Day In The Pool

Isaac had a great time relaxing and kicking his feet in the baby pool. Then when we brought him inside his oxygen saturation levels were staying at 93% without the o2 for at least a 1/2 an hour! Woohoo!

-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

Making Friends In Mysterious Ways

So we're home and Isaac is doing pretty good. It will take a while to get his oxygen requirements back to baseline...something we can deal with here as there is no place like home! A few people asked me if it was easier for me to have him up at the hospital for awhile, if it was a nice break for me, and the answer to that question is a big fat NO. At home I have trusted nurses who care for him for part of the day while I take care of things or spend time with my daughter. I never have to worry about him here. At the hospital.......well that's a different story.

Today I want to talk about the people who have touched our lives in the past 2 years through Isaac. I truly believe that God brings people into our lives at just the right time, right when we need them. He knows! He loves us enough to know we can't possibly make it through the challenges of life alone. Through Isaac's fragile life I've met several people who have become dear to me through organizations, nursing agencies, church and even from halfway around the world on the Internet who share a special bond......being a Mom to a special needs child.

Right after finding out Isaac's diagnoses and going through the roller coaster of the NICU I felt like I was swimming alone. I thought "could anyone possibly understand what I'm going through?"During that time a friend of a friend unexpectedly came into my life who understood. Her daughter had also experienced the In's and outs of hospital stays and was medically fragile. She even had a rare disorder that caused everyone to scratch their heads. Having her call me frequently to see how I was doing during that time kept my head above water. I thought "She understands me, she's been there!" I could call her anytime and ask her a bunch of funny questions. What a blessing!

Later down the road, as most of you know, I met a family through the hospital who's daughter shares a similar chromosome disorder involving chromosome 10. This disorder is extremely rare and they live close by us. What are the odds? What a trip it has been getting to know the adoptive Mother as we both went through the ups and downs of having a medically fragile child. Sadly their daughter passed away last month, but I am so thankful that I got to know them.

About 5 months ago I wrote a poem called "I Often Wonder." I posted it when we were on caringbridge just for kicks. Well much to my surprise it's been in 3 newsletters already! So when it landed in one of the newsletters through Isaac's school I got a phone call. This nice lady said she appreciated my poem because she has a fragile baby who has been in and out of the hospital too and she was wondering herself "could anyone possibly understand what I'm going through?"So now I am able to give back to her what that special friend did for me back in the NICU days.

I posted the poem on the side of my blog.

-Colleen

Home Tweet Home Tommorow

Isaac is doing real well and his oxygen requirements are down so the doctor said that he should be able to go home Wednesday on oral antibiotics. Yay! And I didn't even have to put on my mean face!

-Colleen

A Great Mother's Day And A Hospital Update

So today was a wonderful Mother's Day starting with a picnic at the park with my daughter and my mom. The weather was beautiful! Then we went up to the hospital to kiss the little man and make him smile.

Isaac's oxygen requirements are still higher than usual and he's still working on a round of IV antibiotics for this infection. There is still no plan for discharge at this point, but hopefully he can go home soon on oral antibiotics. I will really be pushing for that when I talk to the doctor tomorrow, even if I have to put on my mean face. (:

The first couple of days there he seemed like his usual happy self, but we could tell by tonight that he's starting to feel a little restless by not being around his usual routine. He sometimes gets overstimulated there by the lights and noise so he doesn't sleep very well. Poor baby.

Isaac is aware more than ever of his "people"so it's been nice to have Daddy, Grandma (my mom) and Aunt Cassie take turns visiting him when I need a small break. Aunt Cassie works in the ER, so she's been able to peak in on him once and awhile on her lunch breaks. He also has Lynn, his favorite home nurse checking in on him too. I called her tonight and she's going up there first thing in the morning to give him one of his head to toe massages, not only because it will make him feel better, but because the IV steroids are causing him to swell up, so this will hopefully help relieve some of the extra fluid that he is retaining. I really don't like seeing him look like that.

So that is all I have to report today.......Thank you so much for your continued prayers and the nice comments on our blog.

-Colleen

Tired Mama

So Lynn and I went up to the ER this morning hoping to just get a chest xray done and then be on our way home, but since Isaac had such an increase in his 02 last night they decided to admit him overnight. Well after getting upstairs the cultures came back from his trach and the doctor decided to keep him for possibly a couple more days on IV antibiotics. Although it's never fun to go to the hospital, it was nice to see some familiar faces who had not seen Isaac in awhile. All of the nurses couldn't believe how much he had grown since our last admit in September. Anyway, right now I am going to bed because I didn't get very much sleep last night because I was so worried about Isaac, then I was at the hospital for 11 hours. Whew! I'm hoping that soon I can get this email subscription figured out so that I can program it for people to get notifications on the same day and not the next day. Bare with me, I will figure it out someday, but for now......yawn......sleepy time.

-Colleen

Going To The Hospital

Hi, we are going up to the hospital this morning right after I take my daughter to school. Isaac's effort is increasing and he needed up to 10 liters of 02 while he was sleeping last night. I don't know if we will be admitted, they may just do a evaluation on him and a chest xray...I will keep everyone posted. This is unfamiliar territory as Isaac hasn't been there since September. Thanks for the prayers!!

-Colleen