September 28, 2009

Day #18

Highlight of the day: Last session for now

The day began with running around the house. Whitney had a fever the night before so I was trying to decide if she was well enough to go. I determined that the fever was from teething and proceeded with the morning rush routine. Thankfully, Matt brought Fiona to my sister in laws and Whitney and I were on the way.

It was not her most successful day as she was not feeling 100% but we survived the morning with a few more tears than normal. Someone said we should have taken a picture of her since it is a rare occasion. I am so thankful that she is so good natured.

Our plan for October is to have a follow-up session once a week. We also have a few doctor appointments. The first one is a check up this Thursday with her plastic surgeon. He made her back look pretty after the neurosurgeon closed her spinal cord shortly after birth.

Thank you for following us through our daily journal this past month.

September 24, 2009

Day #17

Highlight of the day: Swinging her leg

We have been practicing walking backwards while holding onto a stool for the past few weeks to keep her from collapsing her legs while walking and to keep her legs straight. This involves me moving her legs for her from behind chanting, 'swing, step, swing, step, pull' (the stool). I have developed a habit of just doing it for her and today when the conductor helped her she encouraged Whitney to swing her leg herself and she did it on her left side. Pretty interesting since her left hip is the weak or underdeveloped one.

I am so glad we ended the day an this high note because I was pretty discouraged during the middle of the morning. We have been working on 4 point crawling all month and there has been little improvement. Her thighs are so weak from being in a hip spica cast and the hip brace that her body just can not hold the position for very long. I just have to remember that we had many months of immobilizaton that we are still recovering from.

Tomorrow is our last day! Bittersweet

September 23, 2009

Day #16

Highlight of the day: Daddy

Daddy came to visit. Whitney was so excited. All three kids we at the parallel bars and they were to stand up from sitting on thier stool. Whitney refused to do it and faught me as I tried to hold her up. Her daddy walks in and I said, "Whitney, lets show daddy how you stand so tall." She stood. Daddy should come every day!

The day went very well. She initiated standing for the first time this morning and followed direction fairly well. We worked on crawling and she is doing much better with bringing her alternate foot up when I shift her weight for her. Slowly but surely we are making progress.

We had a parent conference after the morning session. It was good to hear their suggestions. They recommend that we have follow up sessions in the next 8 weeks once or twice a week. In December, they would like us to come to another parent and child class for 3 weeks. We would begin transitioning her to be there without me there. I think this means I could take a Starbucks break for an hour or so!

Whitney turns 2 in January, and they would like to her to attend treatment without me 5 mornings a week from January through the beginning of June and then from September through the following June. We were not surprised by this recommendation because they had laid out this schedule in the past. But now we have to make the decision. There are many factors at play including whether we can obtain financial assistance from either the local intermediate school district under the Individuals with Disabilities Education Act or from our health insurer. We are also concerned about Whitney spending this much time away from our family at such a young age, that Whitney will not be able to attend the children's program at Bible Study Fellowship because of conductive learning, and the likely delaying effect that conductive learning will have on our plans to move to Zeeland. On the plus side, we have seen significant strides by Whitney in controlling her bladder and bowel functions and moving her legs. Weekly one-hour physical therapy visits with the physical therapist, while helpful, cannot begin to replicate the gains we have already seen from conductive learning. Please pray with us as we desperately want to make the right decisions for all involved and to use our time and finances wisely.

Day #15

Highlight of the day: Afterwards

We were on our way to pick up Fiona, and I look back at Whitney and she is moving her legs up and down over and over. It was so cute because of how she was concentrating and starring at them. This was quite the highlight for me. She also had a great day of record standing time while holding onto a stool.

The morning is now becoming a habit for all of us. Although, the weariness is setting in we know what to expect from the days as they fly by. Whitney did a great job listening and following directions even in her friend's absence.

Following our session we had a parents meeting update us on Conductive Education in the US. I was not able to stay for all of the information but I did learn a few new things about spina bifida in the CLC world. It is very unusual for a CLC to treat SB or spinal cord injury children. The PETO institute in Hungary has an area of training on SB but not everyone trains in it, and therefore not as many conductors are qualified or confident in treating children with SB.

Afterwards, I learned that the reason that many conductors do not learn to work with children with spinal cord injuries is that many countries and states within the United States have very low incident rates of spina bifida. Hungary, for example, has a very small number of children born each year with spina bifida. Ireland, in contrast, has a higher incident rate. Similar variations occur in the United States. The factor that most affects this rate: abortion.

September 21, 2009

Day #14

Highlight of the day: She knows what she is doing

We start every day the same and Whitney is now moving ahead of the conductor. It is so much less stressful just to know that she knows what is coming next and knows how to do it. Today went well. Currently, we are not working on anything new but trying to perfect what we have learned this month. Tomorrow Whitney's girlfriend will not be there, so it may be an interesting day.

We have 1 week to go. This week Wednesday, we will have another conference to discuss what the plan is from here. I am anxious to hear what their thoughts are for short and long term goals for Whitney.

Next month we have 5-6 appoinments scheduled. I am so thankful that they are in October and not September.

Day #13

Highlight of the day: Whitney's girlfriend showed up

Well, it is Friday and as you can see the highlight has nothing to do with physical development. Whitney's girlfriend had a doctor's appointment this morning so she did not come right away. We did make it through the lying program quite well but once we hit potty time it was too obvious that someone was missing. Not much was accomplished until half way through individual time when we started to cooperate again. Whitney did very well 'walking' backwards again today with her straight knees.

Weekend, here we come!

September 18, 2009

Day #12

Highlight of the day: Standing alone

Here we are on Thursday already. Today we finished our photo session and tried to get some of the pictures we missed earlier this week. Whitney did very well. We are so blessed to have such a good natured little girl. She loves people. What a great gift that is in this world.

We are working on keeping Whitney's knees straight. We are having her bend at the waist to pick up toys to put up in a bin. She is not too pleased with this as it is a little scary for her. We also had her walk backwards while holding onto a stool trying to keep her knees in a locked position.
It is slow moving but she did very well.

Just to remind you that at this point whenever I say she is standing or walking my hands are constantly on her at all times. Today was one of the few times I released my hands and she stood alone for about 20 seconds.

September 16, 2009

Day #11

Highlight of the day: refining tasks

The highlight today is refining. Now that Whitney is used to following direction and knows what she is supposed to do we are trying to get her to do things correctly. Overall it takes a little more concentration on her part and correcting on my part.

Unfortunately, Whitney was a little tired today so we yawned our way through the morning. She did a great job once she relented to following directions. Her individual program consisted of walking with the walker! She was not near as excited as I was. She cried her way through 8-10 steps and we hugged at the end. She was much more comfortable doing her high kneeling, crawling, and going up a few steps. She does like the toy walker better so I may have to keep my eye out for a pretty one. Maybe that will help. (:

September 15, 2009

Day #10

Highlight of the day: Asking to stand up

The first week Whitney had no desire to stand and now she says, "up, up". I have to admit that for now I jump at her request.

Today was picture day at CLC which added a little different feel to the day. The goal is for them to get 15 pictures of each child during the session accomplishing different tasks. It is quite the challenge to get these little ones to cooperate with the camera. I hope to share copies of these photos with you all at the end of the session.

Today Whitney did very well kicking while lying on her back. She also had a good individual time high kneeling while keeping her hips tilted in. Her standing has improved quite a bit. She is taking more weight on her feet each week. We worked more on crawling today through a ladder on the floor. I can not wait until she catches on to shifting her weight on her own.

Thanks for checking in on us!

September 14, 2009

Day #9 (half way)

Highlight of the day: learning how to push the chair in front of her

Today started out very well. It is so much better now that we both know the routine of the morning. I almost do not want it to end. We are both enjoying ourselves and the company of our new friends.

Whitney did really well this morning pulling a hand puppet off her foot while keeping the other one straight not both up together. The lying program went well for all 3 kids which helps everyone involved.

We did an excercise today sitting on our stools by the parrallel bars with a laminated duck near thier feet. The goal was to pick up your foot and cover the duck. So, my problem solver put her hands around her thigh and moved her leg with her hands. Although this was pretty cute it also made me realize how little muscle tone she has in her thighs. This was a big eye opener for me since you need to be able to lift up your foot to walk. I am also thankful for this realization and now we know where we can focus our efforts.

During our individual time we worked on strengthening those thighs! We are tying to teach her how to move her legs up and over toys while she is sitting on the ground. Stay tuned for more thigh strengthening ideas...

September 12, 2009

Day #8

Highlight of the day: It is Friday

(This is Matt, I'm posting this for Susan)

We tried to introduce Whitney to a walker which we hope will be the next step for her. She was NOT interested. She waved her arms and wanted nothing to do with it. I think we may have to get creative on this one.

The morning progressed well until Whitney needed to take a #2 potty break.
20-30 minutes later we continued our individual program. I felt a little better when her friend had to do the same shortly after. We did quite a bit of high kneeling and practiced more weight shifting.

Whitney and I had lunch in the van, picked up Fiona and then headed home.

Her physical therapist came shortly after we arrived home so it was quite the whirlwind. Her PT has not seen her since July and was quite surprised by Whitney's advancement. I am happy to report that we had to rewrite her goals because she accomplished the ones from this summer.

September 10, 2009

Day #7

Highlight of the day: the slide

Whitney had a great morning. It is so fun to watch her gain more confidence. We worked on shifting our weight today from side to side. One of the things that helped us work on this were a few small steps to climb up and then the reward was to side down. With help Whitney crawled up the steps while shifting her weight and won her reward. Then she said, "more, more". It was a big hit. We also worked on twisting at her waist in a high kneeling position to strengthen her core.

Today I had a conference with the 2 conductors that have been in our classroom to talk about how Whitney is doing and what goals we have for her.

First they asked about her health. I explained the hip situation in more detail and we talked about her frequent UTI's and potty training. We also discussed how Whitney's left knee turns in and how we need to continually straighten it for her. She mentioned the benefit Whitney has currently with no deformities and mentioned exercises to work on to help prevent them in the future. We also talked about her AFO's and how we could improve them for next time to better assist her in standing. I am so thankful for their wealth of knowledge.

The goals they set out for Whitney are for her to learn how to follow directions, strengthen her lower extremities, be able to go from the floor to sitting to high kneeling to standing, and 4-point crawling. She also said that they have been very surprised at how well Whitney is doing in a group setting at such a young age. They were very complimentary to the both of us. I have to say that this made my day, maybe even my week.

September 9, 2009

Day #6

Highlight of the day: Endurance

We had a great day today. When I tell Whiteny where we are going in the morning she is happy to go and for that I am very thankful. I think Whitney's love language is words of encouragment. Each day when we finish the lying down program and the individual program the conductor stops to compliment each child on one thing they did very well that day, you should see Whitney beam as everyone claps for her. And she is very enthusiastic when she claps for her friends. It is so cute.

Yesterday I observed that her legs may be getting stronger and was concerned it was wishful thinking on my part. Today it was confirmed. During the individual program Whitney stood with a combination of me assisting her and bearing her own weight for about 15-20 minuites. It was amazing. She found this little stuffed bear that she liked and held him rocking him in her arms as she stood there. We are very encouraged.

September 8, 2009

Day #5

The morning started a little rough for Whitney. I think the four day weekend gave her too much time to relax.

The lying down program went a little slow but well overall. Whitney did well anticipating the next set of excercises and what she was to do. We do a bicycle excercise on her back and I noticed her legs were stronger today than I remembered from last week. Every little improvement helps.

Potty time and snack went well and then we went on to play with our girlfriend at the parallel bars. Today we tried stomping on a sponge with our bare feet while sitting on our stool. Whitney did it! She wanted nothing to do with that sponge thing last week. She did a great job standing while distracted by stuffed ducks to keep her busy. We also worked on crouching from the standing position and then standing back up.

We were so happy to see a few visitors today to give us a little break. Thanks! We were welcomed home by Fiona and grandma in the front lawn awaiting our arrival. Time to rest up for tomorrow!

September 7, 2009

Fiona's Home

Fiona is finally home. It seems like she's been gone for months, not just a week. Within five minutes of Fiona's departure, we noticed how much quieter it was without her. She has apparently had fun touching the frogs and watching the fish at grandpa and grandma's house, going shopping, visiting the zoo ("there were no lions"), and generally being spoiled. In the meantime, we've had a chance to get to know Whitney and her personality better. She's definitely enjoyed the added attention. But we're all happy that Fiona's back, especially Whitney.

The first thing Fiona noticed when she got back--we have "a new Notre Dame flag." Smart kid. She even tried to call Daddy on Saturday to say "Go Irish!" But I was at the game, so I couldn't hear the phone.

September 3, 2009

Day #4

Highlight of the day: Great all around participation and no fear of standing.

We made it through the week! We will start up again on Tuesday morning for round #5. Whitney did a good job following direction today during the lying down program. She even anticipated when she was supposed to roll over to her tummy. We worked a bit more on posture today and trying to lift her hips while on her back. This may take a bit of practice.

Individual program went great today. She worked on crawling, high kneeling, standing, and 'walking'. Let me define how we are currently "walking" for you. Whitney is standing holding onto a chair in front of her and I am holding onto her hips and thighs with my elbows and knees on the floor. It is quite the sight. Today she tolerated walking across the whole room! A real achievement. We arrived to our destination with sweat on my brow.

Enjoy the weekend!

September 2, 2009

Conductive Learning Center

It's been a long time since I posted, but I just found my password again. I know we have posted about the Conductive Learning Center in the past, but since we are spending the next month with them, I thought some of you might find this information of interest:

Conductive education is an intensive, multi-disciplinary approach to education, training and development for individuals with cerebral palsy, spina bifida and other motor challenges.

Developed in 1945 in Hungary by Dr. Andras Peto, conductive education is based on the theory that the central nervous system has the capacity to form new neural connections, despite neurological damage. By repeating tasks and integrating intentional movement with learning, the brain creates alternate paths to send messages to muscle groups, creating the desired movements. Through this, a child can gain movement and skills, and achieve greater levels of independence.

The critical element of conductive education is the integration of motor-skill development with cognitive and emotional-skill development within a group setting. Most children with motor challenges do not learn exactly the same way as their peers. Conductive education helps these students build their cognitive skills and helps them learn to use alternate strategies to learn. This total approach to learning and training targets children under the age of six, when the potential for impact is greatest, and when they can be prepared for the traditional classroom.

Day #3

Highlight of the day: Whitney standing!

The morning started well as Whitney was able to join her friends with a hello song and took off her shoes then the lying program began. Let me just say that I participated more than she did. I just had to laugh at one point. Here I am with a shaking a maraca above my head as Whitney just looks at me shaking her head. Ahhh!

Potty time came at 10:00. She had a dry diaper which is always and encouragement and then went pee pee. Bravo, Whitney!

We then had snack time and worked on some posture techniques. Then on to the individual program. Whitney had a fun time playing a game with her new little girlfriend. They sat on little stools with their feet flat on the ground, a parallel bar to hold on to, and a bin of Ty animals in the middle. We dumped the animals out and they were to basically pick them up and put them in the bin. This was great for Whitney as it encouraged her in a fun way to put weight on her feet. Then I learned how to properly and safely support her while she stands. She did a great job, became distracted, and put all of her weight on her feet--not my hands/arms/back. Whichever you choose. (: It was great. We are gaining confidence together.

Thank you for all of your encouragement.

September 1, 2009

Day #2

So, I have set up quite a nice little challenge for myself over here. I will start with telling you the highlight of the day. Whitney followed direction multiple times throughout the morning! The conductor and I were so excited. It is great to see and gives me confidence that she is able to do this at 1 1/2 year old. I just keep telling myself, "early intervention, early intervention...". We started the morning with having her learn how to take off her own socks and shoes and then went to what we call the lying program. There are different stations we visit throughout the morning and the goal is to walk to each destination to the best of your ability. The lying program takes place on a table of sort that she is learning to pull herself on to and then at the end slide herself down from. We have many activities of singing and group direction while laying down, rolling over, and sitting up on this table. It seems that we spend a good 45 minutes to an hour in this station.

The funny thing of the day was that when Whitney was encouraged by her conductor to walk she thought she would try a new tactic, manipulation. It was quite interesting to observe. Whitney began to fake cry and said in her cute little voice, "hug, hug" as she grabbed the woman around the neck. It worked for a moment until I told her secret. She is a smart little one.

The day was very draining and Whitney and I took a good nap this afternoon. Fiona is at her grandparents for the week so although the house is too quiet without her constant chatter, I was thankful not to have to worry about her as well. Thanks grandpa and grandma!