Tuesday, August 31, 2010

Pajama Wars

Faith in her favorite pajamas
 I can definitely tell that Faith is back in school. Last night we were putting a puzzle together and she began telling me a story. I glanced away for just a second and she said, "Mommy, are you being an active listener?"

She seems to be taking in a lot at school and everyday she comes homes with lots of stories including learning to play "Simon Says" and the new friends she is making. She really seems to like her teacher. She has had trouble with some of her feedings at school for which we are making adjustments. The only really tough part about her and school is getting her there.

Every morning we have a major battle getting her out of her pajamas and getting her dressed. She loves to wear her jammies! And she must like me to wear mine as well because as soon as she notices I've changed from my pajamas to my clothes, the battle begins. She knows it's soon time for her to get out of her pajamas and into her clothes. She cries and screams, "I want to wear my pajamas! I don't want to get dressed!"

This morning, because we actually had extra time, I gave her a five minute time out for her antics. It didn't help. I tried sitting with her and explained that none of the other kids wear their pajamas to school. She continued to cry and scream about wanting her pajamas back on so as a last resort, I turned the TV on to Super Why and that did the trick. The music instantly distracted her and she stopped crying and even smiled.

She looked at me and asked, "Mommy what are you wearing?" She likes it when I describe what I'm wearing and then describe what she's wearing. I told her we both had two white stripes down the sides of our pants and she said excitedly, "Mommy, we match!" It was as if I turned on a switch that made Faith instantly forget all about her pajamas. When I told Rob about this, he said it sounded like she is just trying to give me a hard time. But why, why, why EVERY morning?

Hopefully she will get tired of fighting her pajama war and surrender each morning to getting dressed for school. And hopefully I will retain lots of patience and my sanity until that day comes!

Thursday, August 26, 2010

My First Grader

Faith and I started the school week on Monday by attending a meeting with her special education teacher, both of her instructional aides, her teacher and a nurse. The objective of the meeting was to set up a feeding plan for Faith. Since she will be in school full days, she will need to receive two feedings at school plus I want her to take part in snack time and be with the other kids in the lunch room. Considering Faith's hefty schedule, it took a lot of thinking to include all of this in her day. We came up with a plan and if needed, we'll make adjustments as time goes on. I love that everyone who works with Faith puts her needs first above all else.

Wednesday, Faith and I went down to the school for their open house. Faith brought all of her supplies to school and got to see her teacher and her classroom for the second time. She was excited to see her custom-made desk again. We even went to visit her Kindergarten teacher, Mrs. Steckler and her summer school teacher, Mrs. Delparte. We also visited with the Principal, Mr. Hanson and we rode down in the elevator with our friends, Lynette and her daughter, Ashley. It was also nice to visit with some moms who had kids in Faith's room last year and how they were either excited or disappointed about Faith being or not being in their first-grade class. On the way home, we ran into Faith's instructional aide during summer school, Mrs. Nelson. Faith seemed to have fun seeing everyone again but every time they asked if she was ready for school, she would say, "No, I'm not."

Last night, I attended an awesome prayer meeting with some other members of Moms In Touch. There were moms from about ten Bismarck/Mandan schools who came together and prayed for our kids starting off their new school year. I'm so thankful to be a part of this ministry and for my prayer partner, Tina. It is great to know that every child and staff member at Centennial Elementary is being prayed for throughout the year. I wish every school had a Mom's in Touch chapter.

I knew Faith was not going to sleep well last night. She was so tired but she struggled and struggled and finally fell asleep shortly after 11:00 p.m. She slept okay through the night. This morning, she was not a very happy camper and cried because she didn't want to go to school. Even though I showed her the pretty outfit she was going to be wearing, she wanted to stay in her pajamas. Then she was mad at me for getting dressed because she wanted me to stay in my pajamas. Somehow, she calmed down enough for me to take her picture. When we got to the schoolyard, someone asked if she was excited or nervous and she replied, "Nervous."

I saw her first big smile of the morning when we went inside and she saw her instructional aides and her special education teacher all standing in a group. They all circled around her and told her how pretty her outfit was and told her how much fun she was going to have. She did a great job going down the elevator and when I said goodbye to her, she looked more relaxed. Now, all I can do is sit here and pray she does well throughout the rest of the day and count the minutes before I'm able to bring her back home.

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.