Happy 4th!

Well, we had another successful day at home with Bubba! Thanks for your prayers. We picked Fletcher up at about 9:30 and spent a quite morning at home. Craig's parents came over at about 2:00 and we had hamburgers and hot dogs and the rest of the afternoon was uneventful just like we like it! We took Fletcher back to TCC at 8:00 and stayed with him until they kicked us out at 9:00. We watched fireworks at TCC on the lawn where they have the Farmer's Market. It was great fun. Hope you all had a terrific day as well!

Saturdays at TCC

Saturday Fletcher turned 2 1/2 years old! I can't believe how fast time flies! For the last couple of weeks, two of my sisters (Kim and Dawn) have been coming to TCC to see Fletcher and take advantage of the Farmer's Market. We sure look forward to the great tomatoes (almost as good as my daddy's used to be!) and the laughs that abound when I'm with my sisters! Those girls are hilarious and such a blessing to me!

Fletcher, Aunt Kimmy and Aunt Dawny

Well, Wednesday is July 4th. We are going to bring Fletcher home for the afternoon. Of course, we'll all wear our Old Navy July 4th t-shirts. So, I'll update next time with those fun pictures. We'd sure appreciate your prayers that we'd have a sweet time at home with Fletcher.

On Thursday we will have Fletcher's Patient Care Conference (PCC) these meetings take place every three months. The doctor, nurse practitioners, RT, PT, OT, Speech Therapist and anyone else who works one-on-one with Fletcher will be in attendance. It's a great time for Craig and I to voice our concerns and ask any questions we might have. They also inform us of Fletcher's improvements, needs and anything we might need to know. Before each conference they measure Fletcher and he has been 28 inches for at least a year. :( Well, last Friday they measured him and he has grown a full inch!!!!!!! WooHoo! Way to go Bubba!

We're still waiting for the results on the CT scan. I'll let you you, when I know. Need to go for now!

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.

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!

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!

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!

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!