Thursday, June 28, 2007

Update on Fletcher's CT scan

Fletcher had a sedated CT scan this morning. We'll have to wait for the neurosurgeon to read it and give report to the doctor at the Center. This procedure did not happen without a few 'people problems.' One doctor came out and decided without even using a stethoscope, that Fletcher had 'crackles' which is indicative of pneumonia and "did not feel comfortable sedating him" and he walked away from us. Another doctor, who, by the way sedated Fletcher six months ago for his last CT scan decided he also was not comfortable sedating Fletcher for his scheduled sedated CT scan (to their credit, I will say that these doctors were radiologist.) So, after 2 hours they called an anesthesiologist to sedate him. Today Dr. Furman, walked up to Fletcher and me and asked a few questions and off we went. Dr. Furman was about 75 years old and completely unafraid of my sweet Fletcher. He was precious and was an answer to my prayers. This morning when I was on my way to TCC, as I prayed for Fletcher I specifically prayed that these people would treat him like their own child, that they would show him compassion and Dr. Furman did just that. A lot of the times when we go to any appointment people just stare at Fletcher and doctors make judgements about him that are unfounded just because he's different than the 'norm'. My problem with that is Fletcher is a sweet, smart little boy who deserves to be treated with respect. Someday he WILL realize that people are staring at him and talking about him. I'm not looking forward to that day. Thanks so much for praying for Fletcher today. All in all it went well. I'll update with the results when I know something.

Tuesday, June 26, 2007

Oh, Bubba!

Tonight I went to the Center to put Fletcher in his pajamas and hold him before bed. Well, when I walked up to his bed this is how he looked. As soon as I saw him I just laughed and then he began to laugh. I'm not sure how his blanket got on his head like that, but it looked like he could try out for the part of Joseph in a Christmas play!!!! He totally cracks me up!

Friday, June 22, 2007

Bye sweet friends!

This has been a week of good byes for Fletcher. His favorite teacher's assistant Mrs. Sybil and his PT assistant Mrs. Jenni have left their jobs at TCC. We are sad for us, but we are happy for them because we know that God has big plans for the two of them. We want them to know how special they will always be to us and how grateful we are for their love, dedication and hard work!

Fletcher and Mrs. Jenni his physical therapist.

Fletcher and Mrs. Sybil his favorite teacher's assistant.

Well, Fletcher had his appointment with Dr. Hildebrand on Wednesday. It went okay I guess. Fletcher will be having surgery on his eye again. We don't have a date set yet. Fletcher is having a CT scan next Thursday and Dr. Hildebrand wants to wait for the results of the CT scan before he makes a decision on what to do surgery wise. I'll keep you posted.

Fletcher also got new glasses today. This is his third pair. The last ones were way too small for him and I think that's why he didn't like them. So, we'll see if this pair is any better. I really don't know how to chose glasses for myself let alone my 2 year old! The picture I'm posting is from today. He drove his power chair to school and then he got new glasses, went to school and had OT immediately after class. He was pretty tired when I took the picture. If you look closely at his mouth that's what we call his 'sleepy mouth'. He always does that when he's starting to get tired!

Fletcher sportin' new glasses!

Monday, June 18, 2007

Happy Father's Day!

Yesterday was a day devoted to dear ol' dad! We started the day by picking up Fletcher at TCC and taking him to church with us. He was a bit grumpy and we weren't able to sit in the service with him due to the beeping and crying! Craig and I were shocked, normally we can't hear him cry! Craig and I had to alternate holding him as he slept in our arms. Craig's parents and his nieces joined us for church and for lunch afterward. Great food and family time how fun is that? Kayleigh made Craig a lemon cake (his favorite) and decorated it with cream cheese frosting (also his favorite!) and added lemon drops to top it off! It was yummy and daddy really liked it!After everyone left Fletcher took about a three hour nap! And the rest of us napped as well and we just hung out for the rest of the day. We took Fletcher back at about 7:30. Thanks for your prayers, it ended up being a terrific day with our family!

Today Fletcher had an appointment with his endocrinologist, Dr. Domek. Fletcher is on an extremely large DAILY dose of steroids and they are going to start weaning him off of them. They did try weaning him last year at this time and they weren't successful, maybe just not aggressive enough so, here we go again. Would you all mind praying that we would have success in getting him to a reasonable dosage? Dr. Domek is concerned about the long term effects of long term steroid use, one that he mentioned a lot today was osteoporosis. Anyway, it was a good appointment and since we were at Baptist we were able to go up to the PICU and see our friends there. How fun! Fletcher even warmed up and showed all of his latest tricks. He's very good at his body parts these days! Ask him where his head, ears, nose, tongue, mouth, hands and feet are and he'll show you! What a smart boy!

Last month Fletcher had an appointment with a neuro opthamologist, Dr. Siatkowski. That appointment didn't go like I hoped it would. As you all know Fletcher's right eye hasn't opened completely since birth and we have literally spent his entire life trying to get it fixed. As you may recall he had surgery on his eye on October 18, 2006 with Dr. Hildebrand. And as you can see the surgery was not a success. He basically only got a scar out of the deal! UGH! Well, when we saw Dr. Siatkowski he said the surgery needs to be done again and he referred us back to Dr. Hildebrand! So, on Wednesday we have an appointment with him. Don't get me wrong, Dr. Hildebrand is a good doctor, but I have this feeling that there will be some 'reason' why the surgery didn't work other than the doctor didn't do it correctly! I'm really not looking forward to this appointment. Please join us in praying for resolution to this eye drama!

Thursday, June 7, 2007

An update and an invite!

Well, Fletcher's surgery went well this morning. We arrived at about 8:30 and we were back at The Center by 11:30, not too bad. This is the first time I can recall that we've sent Fletcher into a surgery and he cried as they wheeled him away! I believe he knew something was up and he did not like it. It made me cry as well. What a helpless feeling. It was so difficult to let him roll away with people who do not know him. He, of course survived and the replacement of the new Broviac line went well. Fletcher was smiling when we met him in the recovery room. What a brave boy he is!

On Saturday, June 9th TCC and Mark Harmon (CBS TV series, NCIS) is hosting the 7th annual celebrity baseball game at the Redhawks. It's a great fundraiser for The Center and sounds like a lot of fun. We are planning on being there. We'd love to have all of our friends and family join us! It starts at 3p you can buy your tickets at the Redhawks box office (I think they're about 5 or 6 bucks) the ticket you purchase will also be good for the Redhawks game that evening.

Another exciting thing that's happening at TCC is the Farmer's Market! It is open on Thursdays 3:30p-7p and on Saturdays 8a-12p. It also benefits the children at TCC. Last year I went every Saturday morning and I bought the best tomatoes and fresh fruit! We were really sad when it was time for the market to close! Be sure to check it out when you get a chance!

Wednesday, June 6, 2007

Fletcher is driving!

Last week Fletcher's physical therapist hooked him up with a power chair! And he can really drive it! Yesterday was the first time I was able to see him drive and it was such a hoot! He drove to school and as he was taking his time getting there he saw a lot of his friends so he showed off for all of them! I am amazed at how smart he is, he knows how to maneuver the joy stick to make it go forward, he still needs help to stay away from the walls, but for the most part he's got it down! Fletcher LOVES that chair and he's obviously proud to be independent. If we can figure out how to get video on this blog we'll load the video I took yesterday. I gave Fletcher a haircut today, a summer cut, a burr basically. After I finished cutting his hair I cried, saying what I have done? And that made Fletcher cry! It's so short, but it's so cute! Tomorrow Fletcher is having outpatient surgery at Baptist. He has a central line called a Hickman, which we use to give him IV meds, well the tubing has a hole in it so the line has to be surgically removed and replaced. The surgery is a 10:00 am tomorrow. We'd appreciate your prayers.

Kayleigh has been at camp since last Saturday and is on her way home right now. We can't wait to see her. Craig is sure he's forgotten what she looks like because she's been gone so long! Maddie has been praying every night for her sister to come home safely on Wednesday! And me? I've been praying for her to know Jesus in a more intimate way! And for a safe trip, of course!

Maddie has been busy this week. On Monday she was able to play with two of her friends, Annaliese and Justus and she came home with a new pair of old crocs! Yesterday and today she was able to stay with her cousins and play, play, play! She loves her cousins Devon, Megan and EmiLee! Tomorrow she'll get to stay at home with Kayleigh while we're at the hospital with Bubba! She's also been able to see Fletcher a lot since school is out. I think he really enjoys getting to hang out with Maddie. She loves to play with him and she loves to be in his bed with him!