Another Diagnosis for Noelle

After a routine trip to the pediatrician...Noelle was diagnosed with Ataxic CP today. I'm not surprised or shocked...but seeing the diagnosis on paper reminded me about how thankful we are that she is even here. After I googled the information on that form of CP...I'm totally shocked that I never figured it out before. I've been looking up information on CP for months now. BUT...all of her doctors had convinced me that she had low/no tone and that was opposite of CP. The pediatrician was shocked today to find out that no one had offered this diagnosis for her.

The main symptoms for this type of CP include extreme low muscle tone and tremors. We have been talking about her tremors since the NICU. Her low tone has always been an issue. Even some sites talk about "jumping eyes." This makes me wonder if she really has the nystagmus (sp?) or if it has been a symptom of the Ataxic CP all along due to the lack of oxygen during her early days.

Here is the great news. Having this diagnosis for Noelle means that she will be able to get more services, more OT/PT and hopefully nursing hours during the day to help my mom and mother in law. It is sad to be excited about such a diagnosis. However, we/I have been waiting for answers to predict some shred of the future with Noelle. It is nice to know that something is going on....and this gives me something to work on. Helping Noelle comes first...whatever that involves!!

So...we are thankful! Thankful for some answers, knowledge and hope. Only God knows what the future truly holds for Noelle...and I'm okay with that!!

xoxo,


Stacie :)

November Craziness!

Hey all!! Yay!! Pictures!!!!! The top picture is a picture of Andon at Lowes last weekend doing the Kid Clinic!! The middle picture was taken today waiting at the pulmonologist and the bottom picture was Noelle on her birthday. Look how far she has come!!

Just checking in again. We have been trying our best to stay as healthy as possible. I just wrote the last update on the carepage...and it was hard to shut it down. Noelle was having some desatting issues over the weekend and early this week. The pulmonologist on call increased her steroids and she seems to be doing better.

Andon on the other hand, always seems to have issues after Noelle gets a lot of attention. I think we need to have some one on one time with him this coming weekend. He even told me the other day that he didn't really like Noelle and wished she would go back to Grammie's house. That breaks my heart to hear. I wish I knew how to find great way for the two of them to play together like real siblings. The poor kid has had a cough for about 5 weeks...so I'm hesitant to let him get too close to her.

Noelle had her monthly visit with the pulmonologist today. It was an overall good visit. My fear is that they have no idea what the future holds for Noelle. I think initally, the docs thought that she would eventually come off of oxygen and the feeding pump...and I think everyone is having second thoughts about that now. The pulmonologist referred us to a GI specialist. With her coughing/choking/gagging issues and inability to increase her feeds...the pulmonologist and nutritionist at the office are out of options on how to increase calories and intake for her. He would like for Noelle to see the GI specalist in the next few weeks.

On a great note, Noelle received her H1N1 shot today and did not even cry!! :)

The neurologist just 2 months ago told us that we should expect to see a huge improvement in her language development and gross motor skills soon. She is slowly progressing...but is no where near where she should be for even her adjusted age. To have a 17 month old that can't crawl or even put weight on her hands and knees makes you think twice about her gross motor development. She is too weak to even hold herself up. All the docs agree that Noelle should have more PT/OT/Speech therapies...but how do you get this without paying a fortune for each visit? How do you accomplish this with two working parents? How do parents feel when they know what they should be providing to their special needs kid...but can't go about getting it for them? Its tough...and I wish I had the answers.

I'm in a little bit of a mood today. I wish I had the answers...I wish I knew which direction to go in next for Noelle and the entire family. Coming to the realization that we may be dealing with these issues forever....is hard. Finding a way to deal with them, cope and move on is even harder. Sometimes I still feel guilty and responsible for Noelle and her issues. I know it was not my fault and could not be prevented....I know it is normal to feel this way sometimes...but I thought it would get easier with time. I just have to move on.........

Next week is Thanksgiving....the Mikels have so much to be thankful for. I'm ready for the holidays at home!! :) :)


xoxo,

Stacie :)

Welcome!!

Welcome to our blog!! This is something new for me. I'm sure it will take me a while to figure out. Thanks for the suggestion Lisa!! To follow the story of Noelle and her premature birth and life in the NICU...feel free to log onto our Care Page at www.carepages.com Page Name is "Mikels." From now on, I will most likely update here instead of on the care page. Some things just need to come to an end. The care page was mostly about life in the NICU and Peds Floor. This will be a new beginning of life outside of the hospital. I think now that Noelle is 16 months old...it is just time to move on!! There is a lot to be said about struggling to raise a family with a child with special needs. It can be so rewarding and so hard all at the same time.

I'm going to try better to keep up with our blog and do frequent updates on our whole family. I'm sure much of it will revolve around Noelle. Our live is pretty crazy most of the time. Trying to juggle a family of four, work, commuting, house, bills, dogs, etc...is not that easy. But it's fun and NEVER boring!

I also want to post lots of pictures. I would love to get pictures up soon of Noelle and all of her equipment so everyone can see our set up! It is pretty interesting! With the holidays coming up, life is sure to stay busy!! Thanks for following us and supporting us through all of lifes adventures!


xoxo,

Stacie :)