Saturday, August 14, 2010

Yes, its been five months since I blogged last. Life got crazy...not in a bad way but just in A way!

In a nutshell our summer:

1. Great news on Claire! They do not believe that she has white matter degenerative disease. PRAISE GOD! This was a huge huge answer to prayer! We also ruled out some genetic and metabolic issues at the beginning of the summer. I am SO HAPPY to be done with these two avenues for now. The beginning of the summer was spent getting blood work, (several times), MRI, visiting the geneticist and also the pediatric neurologist. As of now we do not have a diagnosis. HOWEVER she is progressing nicely. We currently do six therapy sessions a week. Four PT and two Speech. She is walking holding onto a push toy and can walk with holding someone's hand but cannot stand on her own yet or walk on her own yet. It seems very likely that she will be doing this SOON and so we continue to pray and explore other avenues for answers. We will be seeing the pediatric opthamologist in September to discuss a leison they found behind her right orbital. This may be a significant finding as some of her issues appear to be vestibular in nature (dealing with balance and sight has a great deal to do with that!)

2. We got to spend a week on St. George Island with Eric's family. Gorgeous huge house, fun people, great food and drinks and it was a time of fabulous renewal. I felt myself sigh and relax. SO GREAT!

3. I dont have cancer! Yes, this is a huge praise. They found a huge (10 lb) it turns out tumor in my abdomen at the end of the school year. I simply refused to deal with it until after we got back from our trip. My brain couldnt take any more information until we had found out about Claire. I ended up having a full abdominal hysterectomy. The surgery and recover were horrible. (60 vertical staples and 10 sutures...) Seriously, the worst physical pain that I have ever experienced. I literally prayed for Jesus to return. HOWEVER, I do not have cancer, which is a huge praise. My lovely mom stayed with us for a week and my mother in law came after she arrived. Our church family lovingly showered us with meals for a month and slowly slowly slowly slowly....I have regained strength. Today I woke up and thought, "Wow I actually feel like myself" Its a nice feeling.

And that brings us to now....the Girl began 7th grade. UNBELIEVABLE!!! I returned to working three days a week and the school year is underway.

Below are some pictures to catch you up. Enjoy!
Sweet Claire!

Me and the girlies! I love how they make each other laugh!

The Girl the night of her 6th grade Moving Up Party

Bloggers being pokey so more later! :)

Thursday, March 11, 2010

The Mischevious Plans of Kitty Cat and Baby Girl

Hmmmmm, I know the guinea pig is in there somewhere!!!
Guinea...if you come out Ill figure out a way to get you out! PROMISE!!!

Btinging in the reinforcements...Kitty examines the situation
Baby Girl: " I dont know that we can get her out!"
Baby Girl: "I know, it would be so much fun to play with her!"
Kitty: "Play? What do you mean play?"

Alas, even jumping on the cage doesnt work.
So much fun for all...guinea included.

Test Results

I wanted to give you and update on sweet Claire as we visited the neurologist and got some test resuts back last week.

We didn't get any real answers when we went back after waiting on tests results. MOST of them came back fine. Three were red flags and one test was not able to be completed. Two of the red flags could be due to lab error as they tourniquet-ed Claire when they took her blood which can mess with the readings. Both of those tests were higher than normal but not significantly so...enough that we need to get them re-done (BOO!)

One of the genetic tests came back with a red flag in that she has a "clone" on one of Chromosomes...this being a duplicate gene sequence. As the report reads, "This may or may not be of significant issue" (in other words, not sure if that could cause what Claire has or not.) the other genetic test needs to be redone. She tested negative for 127 other genetic diseases.

SOOOo all that to say that we go for another MRI in June which would be able to tell if there has been any change in the white matter in her brain , which we do NOT want or if it has stayed the same which would indicate CP. We will also see a geneticist towards the end of April (when I get my husband back after tax season :) ) to follow up on the "clone" issue. Unfortunately we dont have access to her genetic information from her parents so that limits us but it may still be a valuable peice of the puzzle.

This has been so hard I cant even tell you. I love her so much and she is so precious..its hard to see her struggle. She is a very good baby and very easy for the most part...healthy, eats well, sleeps great, doing the normal 18 month things but not walking. She is progressing which is a blessing. She is cruising slowly holding onto furniture but very unsteady. We do therapy five times a week with our therapists and then also do some sessions as home as we can..alot of it is just integrating it into her play time. They are very positive and encouraging that she will be able to walk. So far no cognative areas have show up as damaged...she seems pretty normal in that areas. She definately is feisty and funny. She really does "get" stuff and communicates and interacts heartily with people. At play group she is precious which is encouraging to me. She may have a speech delay but we are following that closely as well.

So, there you have it. God was so gracious to me though that after crying a lot after our appointment, mostly out of frustration that we didn't know anything more, I felt him comfort me by reminding me to walk in faith...that was all that I needed to do. I am trying to day by day to do that and not worry about what the future holds or what the next test results will be. I have to be able to live without this huge anxiety hanging over me or I will be so stressed. Ive literally been so stressed these past two months that I couldnt sleep. This is definitely rigorous in terms of physically and just managing all the various components, BUT I am learning to just do today.

Thanks for your continued prayers. They mean so much I cant tell you. I have no doubt that God has hand picked Claire to be our daughter and that God has her story all mapped out. It doesnt make the day to day easier, but it is a blessing knowing that the King holds the road map.

You are so precious to pray for us and I DO FEEL THEM ALL THE TIME!!!

Sunday, February 7, 2010

Update on the Baby Girl

I wanted to put out an update about the Baby Girl. Our lives have gotten very busy since Christmas (thus the lack of blogging!!) Here is an update/nutshell of what is going on. We woudl graeatly appreciate your prayers as we wait for a final diagnosis.

As you know Claire had been diagnosed at 6 months old with hypotonia which is low muscle tone and she has been in therapy since then. We decided to visit a developmental pediatrician to get some more feedback on why she was delayed developmentally. As of the middle of December she was not crawling yet…a skill she probably should have had about 9 months and in December she was 15 months. The developmental pediatric specialist diagnosed her with Cerebral Palsy and sent us for a series of tests to find out some more facts regarding this. She had an EEG to rule out seizures (she was/is not having any). She also had an MRI to see if anything was going on neurologically. That is where the Cerebral Palsy showed up as an “almost definite”.

There is a possibility that she has another disease called White Matter Disease. White Matter Disease would cause her to degenerate over time. We are currently finishing our second round in a series of tests to rule this out. The first part of the series came back that she is okay in specific areas so we are waiting the remainder to find out for sure that she does NOT have this.

We have been able to get three different opinions on her testing results to date. All three have been fairly positive that it is ONLY cerebral palsy and NOT White Matter Disease. That said, we are also doing the tests to be certain that CP is all that we are looking at. Our final test results and consult with the specialist will be sometime in mid March.

In terms of the Cerebral Palsy, it appears to be mild and affecting the left side of her body more than the right. That is why there was the delay in sitting, rolling over and crawling. It was so precious that on the DAY AFTER we saw the developmental pediatrician Claire started crawling! She is so happy with herself and loves crawling and getting to where she wants to go! The CP appears to have NOT affected any cognitive areas of the brain—meaning that Claire’s intellect is not compromised! That is very good news.

Currently we are doing therapy five times a week. We have an incredible pediatric physical therapy clinic that we are utilizing and she is progressing. She is mastering pulling up on things and is moving towards cruising along furniture and also standing. They are excellent therapists who know the very BEST BEST strategies to get her to be here she will need to be. (My goal for her is to be walking by the time she turns two!) We also do therapy with her constantly throughout the day…taking little moments to do a repetition of exercises when she is on the changing table or when we are playing or in her crib. A lot of it is positioning her and helping her build the strength to do what she needs to do.

To say the least, this has been very hard, emotionally. No one wants to see their child struggle. It makes me sad to see her in the nursery with the other children who can walk and run etc...and her current physical limitation holds her back in other areas. That is hard to see. However, I have come to realize that no matter HOW sad it makes me feel it is not going to go away. The thing to do is face it. Deal with it. Do what is before us.

Ironically I could not ask for a happier, easier, more curious, beautiful child. She is truly a good good baby and lights up our lives daily...hourly...with her sweetness. I do not know what the future holds at this point, but I am looking at what is before me today.

Thanks for your prayers. :)

Monday, January 4, 2010


Well, that was an interesting Holiday season!

I will spare you the blahdy blahdy blah of the minutia of our lives this past month and a half. Suffice it to say that it was good and we were able to celebrate and have fun and enjoy each other. All good things and for those we are so grateful!

Next weekend we will be getting the Baby Girl baptized! FINALLY...I mean she is only 15 months old! (This is not in line with my Dutch heritage of baptizing the baby once he/she is about 7 - 8 weeks old) I am looking forward to means so much to me to baptize her and give her this outward sign of what we pray will be a life of faith for her.

We had very difficult news over the holiday regarding Claire. We were finally able to see the developmental specialist that we had been referred to back about 8 weeks ago. He is hard to get in to see and then he was sick with the flu on our initial original date for the exam so it got pushed to the 22nd. Baby Girl has yet to crawl and at 15 months is still fairly limited in her gross motor skills. We have had her in therapy both physical and occupational since she was 7 months and while she is progressing, it is not where she should be. Thus the developmental doctor.

He was amazing and took an entire hour to examine her and then told us that he believes she may have cerebral palsy.

NOT what any parent in any situation wants to hear.

CP is a broad term that ranges from being quadriplegic and blind/deaf to not even knowing a person has it. Its not degenerative (it wont get worse over time) and usually comes from a brain injury incurred in utero or during birth.

This was very very hard. I had an experience at that moment that others had talked about but that i had never had has to be similar to what learning disabled students face in the classroom because the doctor was talking but I was not understanding what he was saying or able to follow the conversation. My mind was flooded with the diagnosis. I kept having to ask him to repeat himself and then apologized for being so "not with it" and he gently put his hand on my shoulder and said, "Youre doing great...that is totally normal."

The good doctor got on the phone and set up for us an EEG and an MRI to be completed by the end of the year. (SO HELPFUL) and also called his friend a pediatric neurologist and asked him to see us within the two weeks. Today we go and hear what he has to say and to get the information from the two tests.

People have been praying. Loads of people. Mostly I feel peace. I little anxious, but ironically, E and I made a decision to not let it ruin Christmas and to enjoy the peace that God has given to us through other's prayers for us. It worked and we have been able to rest in God...I dont understand it but I am welcoming it.

And then...

The Baby Girl started crawling!! Like... on the 28th!! Like in, she couldn't, and then she could.

I can only attribute it to God intervening.

She is far from where she should be but the fact that she is mobile has made her immensely happier and just motivated her to move forward. I am so excited for her and tremendously encouraged.

Today we will find out what exactly this is going to look like. Pray for us if you think of it. I will keep you posted!

Thursday, October 15, 2009

U2 Concert

In a word: AMAZING!

Truly the best concert I have ever been to.

11 things I learned at the U2 concert:

1. U2's music will stand on its own regardless of time and place.
2. 5 dollar Aquafina tastes the same as regular Aquafina.
3. Standing on your feet for over 5 hours will render your feet very painful.
4. You can text during the entire opening act and no one will care.
5. Women over 50 should not wear tube tops.
6. Texting to someone standing next to you really IS the best way to communicate!
7. Larry Mullen Jr. is not only a good muscian, but lets be honest, He's HOT
8. Bono will never go out of style.
9. I am old .
10. It takes about 2.5 days to get my hearing back.
11. Sweating out 5 lbs durin a concert...well worth the effort.

It was hot and loud and crowded and sweaty and tiring and amazing and incredible and I would do it again this weekend! I loved it.

Monday, September 28, 2009

Claire's First Birthday