Monday, August 23, 2010

Decisions, Decisions

It's that time of year again - time to make major decisions regarding Faith's school year. Last year we had to make the huge decision of Faith attending Kindergarten for half days or full days. We decided half days would be enough for her, considering she still had therapy sessions at MedCenter in the afternoons. Looking back, I think we definitely made the right decision.

This year, we are looking at Faith attending school full days. With that decision made, it opens the door for many other decisions to be ironed out. Some of those have been very difficult decisions and as we make them, I find myself wondering if we're doing the right thing.

For instance, Faith has been seeing her physical therapist at least once a week since she was six months old. I have always dreaded the day that we would not have Faith see her anymore. Well, that day is coming. We decided to for-go physical therapy at MedCenter, until January anyway. We hope that by cutting PT from her schedule at MedCenter, (she'll still receive PT services at school) Faith's lighter load will enable her to have more energy for school.

We have also decided to cut out Occupational Therapy (OT) at MedCenter for about a month to see how she does in school full days. We're hoping that by being around the other kids during snack time and lunch, Faith will feel more motivated to feed herself, which is something we've been working on during OT.

We will continue with her speech therapy at MedCenter, to the relief of those who work there. They were worried they wouldn't be seeing Faith at all anymore!

I hope we are making the right decisions. I know that if full days don't pan out, we will just have to take another route. The hard part about making decisions is the not knowing part. She has had one full day of kindergarten and she had two full days at summer school - all of which went great. But this is going to be five days in a row, week after week. And when she's in school, it's not just class she's attending, she also has all of her therapies plus her special education program.

I wouldn't be so concerned if she was a good sleeper and I knew she would regenerate her energy but she doesn't sleep well sometimes and she has less and less stamina as the week wears on. We just don't know how she's going to handle all of this. What I do know is that we do the best we can with what we've got and that someday in the future we can hopefully look back and say, yes, that was the right decision.

Faith will be taking a break from seeing her much-loved physical therapist at MedCenter

Tuesday, August 17, 2010

Growing Girl

Look at those long legs!

Every where we go, people who know Faith comment, "I can't believe how much she's grown this summer." We can't believe it either! We just weighed her the other day and she weighs 48 pounds. 48 pounds!! That's so unbelievable to me as her weight has been an issue for so long but finally she is starting to fill out more and she even has a roll in her tummy! I also tried to measure her while she was lying down and as far as I could tell, she's about 47 inches tall - almost four feet!

Rob and I have had to make adjustments in the way that we carry her and bring her from room to room. We have to remember her legs are longer so we have to sort of turn sideways when we carry her into the bathroom or into her room. Every once in a while we forget how long she is and bump her feet on the wall or the doorway. This summer we have had to adjust her chair and need to adjust her stander as well.

Just out of curiosity I looked in my baby book to see what my measurements were when I was her age. When I was seven I only weighed 45 pounds. I was scrawny due to my heart condition. But I was taller than Faith - I was 49 inches tall which made me look really skinny.

While I am thankful Faith is growing, it forces me to think about our future when I may not be able to lift her at all. My cardiologist told me at one time I should probably not lift her when she gets to be 60 pounds or so. At one time 60 pounds seemed a long way off, but not anymore! I need to remember to take it one day at a time and to replace anxiety with prayer. God has given me so much strength to enable me to look after my daughter. I know he will continue to give me the strength I need as my daughter continues to be a growing girl.

Tuesday, August 10, 2010

Our Sesame Street Live Experience


Faith loves Sesame Street and has gone to Sesame Street Live for the past two years. Both times she was a little tense during the whole show and startled during the loud, sudden noises. Even through the tension and startling, she still seemed to have fun. But because of her startling, I wasn't sure if I was going to take her again. But then when I asked her if she wanted to go, she became very excited so I purchased the tickets.

All day Sunday she was ready to go to "the big building," (her name for the Civic Center), for Sesame Street Live. The show wasn't until 4:30 so she had kind of a long wait. Finally, the moment arrived and we drove down to 5th Street for the big event.

When we got into the auditorium, Faith got very nervous and became very tense. Our seats were on the floor about seven rows from the stage. An events coordinator tried to get us closer to the stage so Faith could see better and while I appreciated his consideration, I said it would be better for her to be further away. As we sat there waiting for the show to begin, Faith kept saying she wanted to leave the big building and go back home. We went out of the auditorium where it was quieter and I tried to remind her how excited she had been to come here. Eventually, we heard Big Bird's voice so we ventured back inside. We stood at the back for a while then slowly moved forward. It was dark and loud and when we got to our seats Faith started crying and wanted to leave again.

I was beginning to think we may have to forget the whole thing and go back home. I was so disappointed - not in her but for her. I really believed she wanted to see the show but the loudness and the darkness were getting her so worked up that her already tight muscles were working overtime causing her to be physically uncomfortable. I so wanted her to be able to relax and have fun. I decided to give it one more try.

We went back out and had a little talk. I tried to comfort her and encourage her as best I could. By this time, almost all of the characters were on stage and I knew she really wanted to see them so she agreed to try one more time. Again, we slowly ventured inside and stood at the back for a while. This time, I didn't try to go all the way up to our seats, I stopped at the last row and asked if she was OK. She seemed fine this time so that's where we stayed. Finally, I saw her smile as she yelled, "Oh boy oh boy look at all the characters on stage!"

YAY!! I was so happy and excited for her. It took a lot of coaxing but she was able to overcome her anxiety and ended up really enjoying the show. She sang along with the songs that she knew. There were still a few startles here and there but she did really well for the most part. Her favorite part was the Elmo's World scene complete with Elmo's friends, Dorothy and Mr. Noodle. As far as the actual show, I thought it was the best one we have ever gone to. They made it very interactive with the kids and there were some really cool backdrops and stage effects. Chances are, we'll probably end up going again next year!

"La la la la, la la la la, Elmo's World. Elmo loves his goldfish, his
crayons too, that's Elmo's World!"

Friday, August 6, 2010

The Dreaded Botox Appointment

Today was the dreaded day. Faith's botox appointment was at 12:30 and now, thank goodness it is over. She is happily at home watching one of her favorite Elmo DVDs.

While we were getting ready to go, she asked who we were going to go see. Usually I volunteer this information but I wasn't sure what to say to her. I told her we were going to see Danielle (who helps Dr. Eggert, the one who injects the botox). Faith loves Danielle and I think the feeling is mutual. She asked what we were going to do with Danielle and I told her we were going to talk to her. Then Faith asked, "Mommy are you going to be there with me the whole time?" She knew something was up.

Danielle met us out in the waiting room and we went back to her office. She applied some topical ointment to Faith's skin that would help lessen the pain of the needles. Faith was totally fine with that. We had to wait about fifteen minutes and during that time I tried to explain to her that Dr. Eggert was going to have to put some little prickly things in her legs but that it would help make her legs feel better. "OK mommy," she said.

After awhile, it was time. I put Faith up on the bed and forced her on her side. It was then she started crying and asked to be turned back over. Dr. Eggert and Danielle applied some cold spray to a spot on her leg to numb it even more. Faith didn't like this at all and really began wailing. "Help me, help me, mommy," she cried. That's when I almost started crying too. I was her mom. I was supposed to be the one protecting her from pain, it's really an awful feeling.

The whole thing lasted about 15 minutes. They had to do four different parts of her legs. And before each one they had to apply the cold spray. Toward the end, Faith actually let up from crying. She believed us when we told her it was almost over.

As soon as she was done, I rolled her over onto her back and she said, "I want to see daddy." I don't think she was too happy with me. Then while she was still crying, she said, "Thank you Danielle." I picked her up and gave her a big hug. After a few more little tears, she was already back to her normal, cheery self. She was happy not to get just one but two stickers for being so brave. Her dad was on his lunch break so he was able to rush over to see her and give her lots of hugs and kisses.

We should be seeing the results of the botox in five to seven days. Her muscles will be more relaxed and she should feel more comfortable. It's hard to get through the actual injections but the benefits are worth it. And if all goes well, we won't have to go through this again for another six months.

Thursday, August 5, 2010

Summer Visits

The nice summer weather makes it easy to take Faith out and about and being the little social butterfly that she is, she loves to go visit people. The month of July proved to be quite the month for socializing, as you can see by the photos below.
We enjoyed seeing Faith's aunties Tesa and Dawn and also Faith's
cousins, Donnie and Preston. Also, uncle Robert who is taking the photo!
Faith really likes to visit with Dave and his wife Lisa but she might
like their dog Ginger even more!
Faith enjoys visiting with Kimberly and her sister, Melanie

Faith says good-bye to Kimberly and Matt before they move to Kansas
Faith enjoys her first campfire with some friends

Faith loves seeing her Grandma and Grandpa!

Monday, August 2, 2010

Smiling Despite the Pain

Yesterday, Faith cut her little toe. Rob was in the back room with Faith and I was in the adjoining bathroom taking a shower. Rob had put Faith on the floor beside the door so she could talk to me while I was in the shower.

Faith was yelling, "Mommy can you hear me?"

I yelled back, "YES!"

Then when I got out, I put on my robe and opened the door. Faith got so excited and starting giggling.

"Did you have a nice shower?" She asked.

She was acting like her normal cheery self so I was surprised to look over and see bright red blood on the floor. Immediately, I bent down towards her to find out where she hurt herself. I saw blood on her toes on her left foot. I called Rob over and we tried to wipe the blood away so we could figure out where she cut herself. It wasn't until Rob and I started fussing over her that she realized she had hurt herself.

While Rob picked her up and held her, I went to get bandages and other first-aid supplies. The blood kept coming and we were accumulating a pile of bloody bandages. I found she had cut herself on the bottom of her baby toe so I applied pressure to try to stop the bleeding. Faith looked a little panicky but she wasn't crying.

From what we could tell, it looked like when she was kicking her feet around she caught her baby toe on something but when we tried to figure out what she sliced her toe on, we couldn't see anything sharp. Finally, I was able to stop the bleeding and put a band-aid on her little toe, which was a feat in itself since her baby toe is so tiny. Last night, it started bleeding again in the bathtub so I doctored it up again and this morning it appears to be healing.

Faith didn't even cry when she cut herself. If she hadn't been bleeding, we would have never known that she hurt herself. Rob and I concluded that she feels pain everyday, especially with the high tone in her legs. To her, a cut on the toe is nothing compared to what she goes through on a day-to-day basis. This makes me sad for my daughter. At the same time though, I feel even more proud of her because despite the pain she feels, she still has such a bright, cheery attitude. And this, I believe, is because she knows she is loved so much by so many.