Let's see...

It's been a busy day! Fletcher had a dentist appointment this morning so I arrived at the Center at about 8:15. When I got there they told me Fletcher and all his little buddies were moving to different units. Fletcher is now in Unit 7 right next to our friend, Andrew! Yea! Okay, so back to the dentist, Dr. King comes to the Center once a month to see TCC kids. Fletcher has about 3 loose teeth, yes, my two and a half year old son has several loose teeth! Dr. King said 'Fletcher's alveolar bone seems mobile.' Well, Fletcher was not really happy to be at the dentist and I was just trying to get him out of there before we had a situation on our hands, so I did not ask the appropriate questions. For instance, what the heck is an alveolar bone? And should it be mobile? Will his permanent teeth be mobile also? Are you kidding me? So, I talked with one of the nurse practitioners and she was clueless also and said she would look into it. So, we'll see. Dr. King said Fletcher's teeth are loose, but not about to fall out unless he gets hit or we tug on them. I told him we would stop hitting Fletcher. (j/k) I did tell Dr. King that I was NOT emotionally ready for Fletcher to loose his teeth, he said they would only pull them if he thought they were so loose that Fletcher might swallow one. You guys, I was not ready for Maddie to loose her first tooth and she's five! I keep telling myself, this is not about me. I really don't want him to be in danger, so if they have to come out so be it. Not my will, but Yours be done, right? Right! Here are a couple of pictures of Fletcher from today, during one of his 'good moments'. He's such a hoot!

Well, it looks like the 'EYE DRAMA' might be coming to an end. Fletcher will have surgery on September 17th at 7:45 am. Please pray with us that the doctors will have wisdom and this time the surgery will be a success, that it will open his sweet little eye. He deserves for his eye to be opened! I will also be praying, like I always do, that the people who come in contact with Fletcher that day will treat him like they would treat their own child with compassion, respect and dignity!

Kayleigh has had a busy week also. She had two test this week and feels like she knew the material and did well on each test. She is also very involved with the youth at church. Last week she went to a football game with a friend and had a blast. That was a hard one for Craig and me, letting her go and hang out with friends, but she's a good girl and we trust her. Tonight she is spending the night with one of her best friends.

Today at Maddie's school they had 'Hat Day' she paid a dollar and was able to wear a hat. Also, today she was able to hang out with her Aunt Kristi. Kristi was off today and offered to pick Maddie up from school so I could spend some time with Fletcher. It turned out to be great day for her to go with her aunt, seeing how busy today ended up being! Thank you, Kristi!

Where did that come from...

When Maddie was in PreK she experienced anxiety almost everyday when I would leave her. Since she started Kindergarten she has been such a big girl. She hugs and kisses me goodbye and then I leave. Until this morning, when I TRIED to leave she would not let go of me, she told me she didn't like Kindergarten and she said she wanted to stay with me. She had a complete meltdown! I had to leave her crying with her teacher. It was heart wrenching! When I picked her up she was perfectly fine, of course. I asked her what happened this morning and she said, "I think since I got to be with you all day for four days I just wanted to stay with you some more. I guess." Maddie just cracks me up sometimes!

Fletcher is still having some hard times. He is not desating, but he is having moments of being mad, irritable, sad (crying with real tears and a puffed out lip) and he has started hitting! My sweet baby boy is hitting! When he is in the middle of one of his 'moments' he will hit whoever is trying to soothe him. Craig and I were able to spend a lot of time with him this weekend and he was grumpy for most of the time we were there! Here are a few pictures of us trying to make Fletcher happy. As you can see it just didn't happen. I think he is going through withdrawal from the weaning of the Methadone and Valium. Craig and I would appreciate your prayers on behalf of Fletcher. We have gotten so used to the 'Happy Fletcher' and the way he's acting now reminds us of when he was little and very sick. That makes us really sad.

I was right...

When I arrived at TCC today I was greeted with this announcement: Fletcher has C.Diff! UGH! Are you kidding me? C.Diff is a bacterial infection in the intestines and this is the third time he's had it! I knew something was wrong with Fletcher's tummy! So, today they stopped the IV Vanco and now he's on Flagyl. He's also kind of in isolation, they are gowning and gloving to change poopy diapers! That stuff is toxic! He was calm and quiet when I was with him this morning, this afternoon when Maddie and I got there he was happy until he got tired! He gets kind of cranky when he's tired these days! We were going to bring Fletcher home Monday since it's Labor Day, but I think we'll wait and let him recuperate. Here's a couple of pictures the top one was yesterday, Fletcher is playing with Maddie's new play cell phone and the one on bottom was today when Maddie and I were visiting Fletcher. I took this picture because I thought his little hand looked so sweet on Maddie's arm. AWWW!

Oh my...

Yesterday we started our day just like we always do, Maddie to school, me to Target, then off to the Center to spend time with Fletcher. When I got there he was a little cranky but I got him dressed and ready for his PO feeding. He was even crankier when he ate, so I stopped after only 3 bites of food. I thought maybe he'd be better if he went to class. I don't know what I was thinking! He had a really tough time there. I vented his G-tube thinking maybe his tummy was hurting. That turned out to a big mess and on top of all that I had to leave to pick up Maddie from school! Maddie and I went back to TCC and Fletcher was much worse, so much so that the doctor ordered Morphine every 6 hours. His central line would not draw blood so they did an arterial stick (not fun) and all his blood work came back normal. I thought there might be something wrong with his tummy, so they ordered x-rays of his lungs and abdomen. We also wondered if maybe he was going through some withdrawal from the weaning of the Methadone and Valium. We could not figure out what was wrong with him. He was irritable and cried very easily, it was heart wrenching to watch. AND remember Maddie was with me. I tried so hard to get her to understand that Bubba was in trouble and I just needed her to sit still and color. Picture this, Fletcher is literally surrounded by a doctor, 3 nurses an RT, me and Maddie! She was adjusting his bed and trying to climb into his bed, pushing people out of the way so she could see her brother. It was too much. One of the other moms came and got Maddie and she played with her for a few minutes. Then one of Fletcher's teachers came and took Maddie to a class room and she stayed there for at least 2 hours. That was such a blessing to her and me! Fletcher finally went to sleep and I went and got Maddie so we could get home to Kayleigh. He was asleep when Craig got there and when Fletcher did wake up he was so irritable that Craig just tried to help him get back to sleep. We are only allowed to stay at the Center until 9pm so Craig came home and we called to check on Fletcher at about 10pm and he was a little better. This morning when I got there Fletcher seemed worse! They said he had a pretty rough morning. I held him the whole time I was there. One of the Nurse Practitioners came into assess him and as we began to talk she decided to change his vent settings back to the way they were before we started to wean the vent. In a matter of minutes he was back to his old self! He was blowing kisses to every girl he laid eyes on, waving, showing us all his tricks! It was amazing! God is so good! Usually Maddie and I go to TCC after lunch and each day this week we've stayed so long that we've messed up her nap schedule. A lot of times as soon as we get home I lay her down and it just seems like she doesn't really get to enjoy our home and her 'stuff'. So, today since Bubba was doing so well I decided we'd stay home after lunch, let Maddie play and then put her down for her nap. I'll go see Fletcher later this afternoon when Kayleigh gets home from school.

Happy Birthday, Daddy!

Today would have been my daddy's 73rd birthday. WOW! This year will mark the 10 year anniversary of his death. My daddy was a hard working family man. He loved life and he loved his family. I have so many fun memories of our family life. I am number six of seven children and I remember anytime us kids would fight my daddy would make us KISS and make up! It was horrible at the time now when I think about it it's hilarious! Hey, maybe I should make my girls kiss and make up! I'm sure they'd love that! Every summer for our vacation we would visit my grandparents. They lived in Reno, Nevada when I was very young and we would load up the station wagon and my parents would spend a few days driving our family to see our grandparents. In the 80's my grandparents moved to the panhandle of Florida and we would drive there every summer. My grandparents passed away in the early 90's but our family still travels to the Navarre, Ft. Walton, Destin area for our family vacations. Oh, how I miss him. I wish he could have met Craig, Kayleigh, Maddie and Fletcher. I talk to my kids about him because I want them to know about Papa Bud. He would have loved them all so much!

Ballet today...

Maddie started ballet/tap tonight. She was excited all day. We shopped for tap shoes and ballet slippers after school. Last year the PreK class wore pink leotards with white tap shoes. This season the kindergartners wear light blue with black tap shoes! Maddie is excited to be on what she calls the 'blue team' and believes this year ballet will be so different. It probably won't but if that's what gets her in the door I'm all for the 'blue team'! Tonight Maddie was reunited with her ballet buddy from last season, Emily. They were so cute when they saw each other tonight and then they realized they had the exact same leotard! How fun! None of Maddie's other friends from last season are taking the class on the same night, so she'll be making some new friends.

This morning I feed Fletcher and he did better. It seems as if each day our feeding time gets a little better. Thanks you, Jesus! He also went to school today. He seemed to enjoy being with his little friends and especially his teachers. After our shopping trip Maddie and I went to see Bubba. He was sleepy! Fletcher and Maddie enjoy each other so much I just love to watch them together. Lately Fletcher has been extremely itchy so each day Maddie has made it her job to give him a 'massage' she gets his lotion out and just rubs his head. He loves it! She's also quite efficient when it comes to suctioning his nose! It's sweet and hilarious all at the same time!

Well, the EYE DRAMA continues...today when I got to the Center I was told that all of Fletcher's paper work at the doctors office and the insurance says that it's his left eye that needs surgery. Guess what? It's his right eye, it's ALWAYS been his right eye. So, now all the paper work has to be changed. So, who knows when we'll have surgery. Please join us as we pray for some kind of resolution to this complete and utter stupidity. Sigh...

A lot going on...

Yesterday was a tough day for our little man, Fletcher. He's having desating episodes again. Yesterday he had about 9 of them! Maybe all the changes he's experiencing could be part of it. Last night when I was with him they needed a urine specimen, trach secretion samples and blood for cultures. Well, last night his central line would not draw any blood so they had to stick him and they needed about 5 cc of blood! That's quite a bit when they have to do it with a needle! Poor little guy! This morning when I went to see him he just wasn't himself, but I proceeded on with our morning routine of diaper change, getting dressed then holding him before I put him in his chair for his PO feeding. Well, as soon as I put him that chair he started to desat so I picked him up and put him in his bed and we had to bag him. I asked the RT to change his trach, just in case it might be causing the problems. Fletcher seemed to perk up a little so I fed him a whopping ounce of green beans and applesauce. He did okay, but when he was done he was done! I kept him with me instead of sending him to school. I held him the whole time I was with him this morning. Maddie and I went up there after lunch today and he was trying to be happy for us, but he's just wasn't himself. Craig is with him now hopefully he's had some rest today and will enjoy his time with his daddy.

Eye surgery update: Saturday I received the referral for Fletcher's eye surgery. Great right? No, not so great. Insurance is an enigma to me. First of all, I'm really not in charge of Fletcher's medical happenings (i.e. booking appointments, setting up transportation, etc) so me having the referral on a SATURDAY with an effective date of 8/30/07 and an expiration date of 8/30/07 (no, it's not a typo, you read it correctly! UGH!) doesn't really do anyone much good! So, today I talked with the TCC lady who does handle appointments and she was clueless about what was happening. And on top of it all the person who books appointments for the surgery at Dr. Hildrebrand's office is off and has been since last week. Guess what? It only gets worse. The TCC lady calls the insurance company and they say it's not a typo that is the day of the surgery! Since when has an insurance company booked a surgery for a doctors office? Did they also call Children's Hospital and book an OR? Guess what? They didn't do any of these things! So, who knows? He might be having surgery Thursday. Tune in next time as the EYE DRAMA continues! Obviously I'm a little frustrated and would truly appreciate your prayers. As I always say, we've been trying to get his eye fixed literally since he was born. It just seems so crazy to me.

Oh, yes I do have two other children, right? Friday night Kayleigh went to a lock in at church. She had a blast. She invited her cousins and they stayed up ALL night playing games and hanging out! Boy was Kayleigh tired when I picked her up on Saturday. At one point on the way home I was talking to her and I looked over at her and she was asleep! Good times! Tonight Craig and I went to Open House at Kayleigh's school. She seems to have some really nice teachers this year.

Maddie is enjoying Kindergarten so far. She isn't experiencing any anxiety when I leave her at school and she is tired and hungry when I pick her up. Today we ate lunch at 11:00 am! We usually go home for lunch and then head up to see Fletcher, because as soon as RSV season starts in October gone are the days of her being able to go up there with me. Tomorrow night Maddie starts tap and ballet again. We have been off since last May, she's pretty excited to get started again. I'll post some pictures tomorrow of her in her new leotard, which is blue this time. I still haven't purchased her tap shoes and ballet slippers we'll do that tomorrow after school. Need to go for now! Thanks for dropping by!