Day Three (a day late)

Playground



Photos:
Chloe & Sasha getting their vitals
Chloe & her favorite CNA (Mariam)
EKG
Playground at TCH
Chloe, Sasha & Dr. Potocki
Ready for bed!

Today started of fun and ended not so fun. This morning, Chloe had a play date with a psychiatrist. May not sound like fun to you but she had bubbles, babies, play-dough, etc. Coco had a great time and the psychiatrist thought Chloe was wonderful.

She had an EKG mid-morning (see photo). She did well with that. Very good girl.

After that she finally took a much needed nap. I talked with a genetic counselor & Dr. Potocki during this time. I found out that our geneticist should have known Chloe's diagnosis of PTLS for more than a year before we got it. We knew she had a duplication on chromosome 17 cince June 06 and we knew it caused CMT. He told us that this didn't have anything to do with her delays. Dr. Potocki went through all of her medical records and her first genetic test showed dup p11.2 (PTLS). Had we known that a couple things would have changed...we would have started the grieving process a year sooner, we would have been down here a year sooner and I would have learned how good school & therapies are for Chloe (more important than we even thought). This was hard news to handle.

After Chloe's nap, we had an appt. with a child psychologist who works with only families with at least one developmentally delayed child. Chloe was asked to do some activities and the Chloe that challenges me daily came out for them. They were the first to see her challenging behaviors (other than during medical testing which I think is normal for all kids her age). She was defiant, sassy, and uncooperative. This made me feel sad after such a wonder first 2.5 days. The doctor wanted to talk to me alone for a while. This was the hardest part of the trip so far. I don't know how much I should write about this because I don't want you to look at Chloe, our family or me any differently. Keep in mind that Chloe is the same child today as she was before we came to Texas. Now, we have more information and the information was very difficult for me to handle emotionally. In fact, I later learned that Dr. Powell (the psychologist) called Dr. Potocki & Dianne immediately my appointment with her. She said, "This woman is headed for a break-down and I am quite sure it will happen this week." (Keep in mind this was yesterday and I am a day late in writing this blog). In many ways this blog is very cathartic for me and if I share too much, I am sorry.

Our conversation started about Chloe's behaviors and how they impact our family. She asked a lot of questions about Quinn and our marriage, etc. I told her that Quinn cannot build, create, draw or do anything without Chloe destroying it. I also told her that Chloe hits Quinn repeatedly throughout the day. At 4.5, he should be able to build towers & super heroes and other things without always having them destroyed before he gets to show someone. He shouldn't have to be hit regularly by his little sister. I know that this sounds like sibling rivalry to most parents, however, it is very one-sided in our home. Quinn puts up with a lot. He has been asking for a lock on his door for a long time because sometimes he just needs to "get away". The psychologist actually said that we should get him one - something we were adamantly opposed to. I also described how Chloe gets locked out of the room when other kids come over because she cannot control her behavior around other children. She doesn't know how to play. They don't want her around and she wants nothing more than to be included. Bottom line - I was feeling so bad for both of my children by the time this session ended that I had begun to break down. It sort of concluded with her telling me that we aren't like other families because we have a special needs child and our lives would always be different. Even though I knew (in my brain) that Chloe would never "catch up", I had some hope in my heart. Having someone say that your life is different and it always would be was hard to hear - at least for me. It is hard to describe some of these feelings but I am prayerful that you will have even the slightest understanding. Because no one we have ever seen (doctor-wise) knows anything about PTLS, hearing this from someone who has seen multiple PTLS patients was just hard.

Well, I recovered after my sweet daughter came into the room and kissed my arm when she saw me crying. I got a grip and headed back to our room to pack for the sleep study. Chloe and I then went to the playground (see photos). We had fun doing that and it was a beautiful day.

A little after 7pm, we headed up to the 21st floor. It is the top floor of the hospital but I always thought the penthouse suite would have large windows with beautiful city views. However, it was a dark, quiet room with no natural light. It was then that I learned that not only did she have to sleep with all of the sleep study stuff (which took about 1.5 hours to put on), she would have to take 4 forced naps throughout the day! We pretty much had to stay in that room all day and she had to take 4 twenty minute naps spaced about 2 hours apart.

Chloe was a trooper - she hated every minute of the cannula & the tape & the hat, etc. but she survived. Dr. Potocki (an amazing woman) stayed almost the whole time they worked on getting Chloe ready (see photos).

We finally got to bed close to 10pm, I think. Oh yeah, they wanted me to sleep with Chloe so I could be sure she kept her stuff on. They use the term sleep VERY loosely. After a while, I gave up and moved to the couch. She was on top of me, kicking me, wrapping cords around me, etc. Neither one of us would have slept at all.