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 10, 2009
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.
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!
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!
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.
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!
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!
August 31, 2009
Day #1
We made it through! Whitney did a great job today. She is still not quite sure about following direction but she smiled her way through the majority of the morning and cried the rest. (:
We began with a informational parent meeting. Whitney is in class with 2 other children and 2 conductors. One of the children has spina bifida and the other has cerebral palsy (CP). They are running two other classes as well for different age groups. It was fun to meet other parents and chat together. There are families from across the US from Michigan, Colorado, and even Alaska . We are so blessed to have this kind of therapy so close to us.
We began the morning pretty low key for the first session. The kids played together while the parent meeting went on and then we started. First we did some stretching playing peak-a-boo and other games to get us moving. Whitney stood with assistance and then we encouraged her to pull herself up onto her bench but she was not very interested, so I helped. Many exercises later we had potty time. Thankfully Whitney is well aware of the potty since we have incorporated it into our daily routine for the past several months. Our hope is that we can train her to empty her bladder so there fewer UTI's and to have as much continence as possible.
We then had a snack time as some need to work on eating/drinking and then we moved on to standing. Whitney is not very confident standing in her new Nike shoes. She bends over quite a bit. We are starting her holding onto a little chair and taking steps backwards to hlep straighten her knees. This takes two adults to help her get to the parallel bars! Did I mention I am getting workout as well? She made it there and she sat on our little stool by the parallel bar. One new exercise was for her to pick up her foot while sitting on her stool and smash a sponge of sorts. Needless to say she was not interested. I hope to tell you in a few weeks that she is stomping all over it. She did some assisted standing and then she became distracted by a toy and did not notice she was standing straight all by herself! I was pretty excited but had to hide my excitement for fear she would freak out. Crawling is another task we are trying to master. She currently army crawls but she did well not complaining too much today as she was encouraged to crawl correctly with assistance. We will see!
Needless to say it was a great day filled with hope for moving forward.
We began with a informational parent meeting. Whitney is in class with 2 other children and 2 conductors. One of the children has spina bifida and the other has cerebral palsy (CP). They are running two other classes as well for different age groups. It was fun to meet other parents and chat together. There are families from across the US from Michigan, Colorado, and even Alaska . We are so blessed to have this kind of therapy so close to us.
We began the morning pretty low key for the first session. The kids played together while the parent meeting went on and then we started. First we did some stretching playing peak-a-boo and other games to get us moving. Whitney stood with assistance and then we encouraged her to pull herself up onto her bench but she was not very interested, so I helped. Many exercises later we had potty time. Thankfully Whitney is well aware of the potty since we have incorporated it into our daily routine for the past several months. Our hope is that we can train her to empty her bladder so there fewer UTI's and to have as much continence as possible.
We then had a snack time as some need to work on eating/drinking and then we moved on to standing. Whitney is not very confident standing in her new Nike shoes. She bends over quite a bit. We are starting her holding onto a little chair and taking steps backwards to hlep straighten her knees. This takes two adults to help her get to the parallel bars! Did I mention I am getting workout as well? She made it there and she sat on our little stool by the parallel bar. One new exercise was for her to pick up her foot while sitting on her stool and smash a sponge of sorts. Needless to say she was not interested. I hope to tell you in a few weeks that she is stomping all over it. She did some assisted standing and then she became distracted by a toy and did not notice she was standing straight all by herself! I was pretty excited but had to hide my excitement for fear she would freak out. Crawling is another task we are trying to master. She currently army crawls but she did well not complaining too much today as she was encouraged to crawl correctly with assistance. We will see!
Needless to say it was a great day filled with hope for moving forward.
Summer
This is just a quick post to catch everyone up on the Nelson news from August. The first week we rented a cottage on lake Michigan. The girls had a great time playing in the sand and I was once again grateful that the brace is only on at night. We all browned up nicely and were able to get a little exercise too. There were 140 some steps going down to the beach. Thank goodness for my Ergo carrier for Whitney. I would not have made it down or up without it. The rest of the month sped by.
September starts with our first Conductive Learning Center (CLC) session called Parent and Child. This means that both Whitney and I will go there Monday -Friday from 9-12. One of my largest concerns was childcare for Fiona. Thankfully between Matt's mom and my sister-in-law we were able to cover all the days but 3.
Matt had the great idea to journal our month at the CLC daily so that we could 'watch' her developmental progress together. So, please bare with me through this next few weeks and pray with us that she is quick to learn and cooperate.
September starts with our first Conductive Learning Center (CLC) session called Parent and Child. This means that both Whitney and I will go there Monday -Friday from 9-12. One of my largest concerns was childcare for Fiona. Thankfully between Matt's mom and my sister-in-law we were able to cover all the days but 3.
Matt had the great idea to journal our month at the CLC daily so that we could 'watch' her developmental progress together. So, please bare with me through this next few weeks and pray with us that she is quick to learn and cooperate.
July 17, 2009
Busy week
Last week Monday we had Whitney's 18 month appointment at the pediatritian. Here are her current stats for you:
Head circumference: 44 1/2cm (10th percentile)
Height: 32 1/2" (80th percentile)
Weight: 22# 6oz (30th percentile)
I have been asked a few times if they are concerned about her small head size and the answer is, no. She has always had a small head and it is growing at a steady rate. We would be concerned if it grew too much too quickly.
Wednesday we had our first group therapy at the Conductive Learning Center. There were two other children and two conductors plus the three parents. The other two children are older and have been in a group setting previously. Whitney was very overwhelmed and cried/whined for the first hour. The second half of the session went better as we both got used to things. She is still pretty young to follow directions and is not always sure she wants to. (: I was very impressed by how organized the session ran even with all the noise Whitney was projecting. We did many exercises trying to do them simultaneously with the other children. It was fun to see Whitney watching the other two very carefully. When we got home she tried a few new things like it was no big deal. Sometimes peer pressure can be positive. We have our second and last summer session tomorrow and plan to go daily in September.
Thursday we saw her pediatric orthopaedic doctor or as we call her, the hip doctor. All is looking well! Every time I have anxiety as we wait for the x rays and once again I breathed a sigh of relief. The femoral head is continuing to develop very nicely. It is always amazing to see the x rays side by side from where we started. What a miracle that if you put the bone where it is intended to be it will start to form and grow. How amazing our Creator is! The current plan is to be in the hip brace for night time sleeping for the next 3 months and then if all is progressing well we will do a four week test. This would mean going without the brace for a week and then checking to see if the hip continues to form. We would do this for four consecutive weeks.
Thank you for checking in. We are so thankful for all of you.
Head circumference: 44 1/2cm (10th percentile)
Height: 32 1/2" (80th percentile)
Weight: 22# 6oz (30th percentile)
I have been asked a few times if they are concerned about her small head size and the answer is, no. She has always had a small head and it is growing at a steady rate. We would be concerned if it grew too much too quickly.
Wednesday we had our first group therapy at the Conductive Learning Center. There were two other children and two conductors plus the three parents. The other two children are older and have been in a group setting previously. Whitney was very overwhelmed and cried/whined for the first hour. The second half of the session went better as we both got used to things. She is still pretty young to follow directions and is not always sure she wants to. (: I was very impressed by how organized the session ran even with all the noise Whitney was projecting. We did many exercises trying to do them simultaneously with the other children. It was fun to see Whitney watching the other two very carefully. When we got home she tried a few new things like it was no big deal. Sometimes peer pressure can be positive. We have our second and last summer session tomorrow and plan to go daily in September.
Thursday we saw her pediatric orthopaedic doctor or as we call her, the hip doctor. All is looking well! Every time I have anxiety as we wait for the x rays and once again I breathed a sigh of relief. The femoral head is continuing to develop very nicely. It is always amazing to see the x rays side by side from where we started. What a miracle that if you put the bone where it is intended to be it will start to form and grow. How amazing our Creator is! The current plan is to be in the hip brace for night time sleeping for the next 3 months and then if all is progressing well we will do a four week test. This would mean going without the brace for a week and then checking to see if the hip continues to form. We would do this for four consecutive weeks.
Thank you for checking in. We are so thankful for all of you.
June 22, 2009
Clinic
We went to the spina bifida clinic on Friday and it went very well. Here is a run down of the people we saw:
Occupational Therapist- She did not observe any delays.
Physical Therapist- She affirmed what we are working on at home is appropriate.
Dietitian- No concerns
Neurologist- No concerns
Social worker- Encouraged getting involved in an on-line support network but thought we were a 'healthy' family.
Orthopaedic- She is not worried about scoliosis. Whitney's left leg turns in at the hip and it may need to be surgically corrected down the road. She wants us to get a stander for her soon. We also were able to retire Whitney's night time AFO's!
Physiatrist- No concerns
I am so thankful we can have all of these appointments in one day. The wonderful thing is that 3 of them wanted to see us back in 6 months so we are able to do it in one day again. It makes life so much easier.
We are currently in need of a used stander for Whitney. If you know of any laying around we would love to put it to good use.
Occupational Therapist- She did not observe any delays.
Physical Therapist- She affirmed what we are working on at home is appropriate.
Dietitian- No concerns
Neurologist- No concerns
Social worker- Encouraged getting involved in an on-line support network but thought we were a 'healthy' family.
Orthopaedic- She is not worried about scoliosis. Whitney's left leg turns in at the hip and it may need to be surgically corrected down the road. She wants us to get a stander for her soon. We also were able to retire Whitney's night time AFO's!
Physiatrist- No concerns
I am so thankful we can have all of these appointments in one day. The wonderful thing is that 3 of them wanted to see us back in 6 months so we are able to do it in one day again. It makes life so much easier.
We are currently in need of a used stander for Whitney. If you know of any laying around we would love to put it to good use.
June 17, 2009
Hospital visit
Whitney was admitted over the weekend for a UTI (urinary tract infection). Routine is now back in place a few days later. We were out with friends on Saturday evening. I stopped in on the girls to check on them and noticed Whitney's legs were warm. She has low circulation in her legs so this was very unusual. Her temperature was 99 something so I gave her Tylenol and tried to not over react. Sunday morning it was up to 102 and we began packing for the ER and calling her doctors. Our guess was a UTI or shunt related. Providentially Matt's parents were in town. We called them and they were happy to take Fiona for a few days.
Arriving in the ER has become easier and I am so thankful for that. Previously it has been very emotional for me now I am able to be more calm which is better for Whitney as well. A few hours in the ER determined a UTI, temp up to 104, and a need to be admitted overnight. We walked on the Peds floor and the nurse recognized us right away. It was nice to be welcomed by a friendly, familiar face. Thankfully, Matt and I were able to be there together to take turns answering the same questions and being an advocate for Whitney. We were discharged Monday late afternoon and Fiona came home on Tuesday afternoon.
A few things we realized we needed to be thankful for:
Family
Great health care
Knowing how to prepare for a night in the hospital
Knowing what steps to take before we leave for the ER
Recognizing faces on the Peds floor
Learning how to advocate for Whitney
Having a long healthy stretch
Being able to work as a team with each other
Friday we have our all day spina bifida clinic and then we do not have much until mid-July. Thank you for checking up on us. Enjoy your day!
Arriving in the ER has become easier and I am so thankful for that. Previously it has been very emotional for me now I am able to be more calm which is better for Whitney as well. A few hours in the ER determined a UTI, temp up to 104, and a need to be admitted overnight. We walked on the Peds floor and the nurse recognized us right away. It was nice to be welcomed by a friendly, familiar face. Thankfully, Matt and I were able to be there together to take turns answering the same questions and being an advocate for Whitney. We were discharged Monday late afternoon and Fiona came home on Tuesday afternoon.
A few things we realized we needed to be thankful for:
Family
Great health care
Knowing how to prepare for a night in the hospital
Knowing what steps to take before we leave for the ER
Recognizing faces on the Peds floor
Learning how to advocate for Whitney
Having a long healthy stretch
Being able to work as a team with each other
Friday we have our all day spina bifida clinic and then we do not have much until mid-July. Thank you for checking up on us. Enjoy your day!
June 3, 2009
Up to 12
Yesterday we had another appointment to check on Whitney's hip growth. The x rays showed an increase in growth over the past 4 weeks. We are thrilled! The doctor said she only needs to wear the brace overnight for 12 hours. When I put Whitney down for a nap and said, 'Whitney where is your brace?' she just grinned up at me. Currently we are equipment free during waking hours. In reality I know this time may not come again so we are going to live it up this summer.
Whitney continues to develop on track in fine motor and speech. We are working on crawling and she is inch worming herself around now. Fiona's personal space is shrinking. I heard her say to Whitney this morning, "STOP touching me!" I love hearing the normal sister stuff.
Another change in the past month or so has been that Whitney now goes #2 on the potty each day. One of her first words is, "poop". I think this is very funny and fantastic at the same time. It seems we have tackled the constipation monster.
Whitney continues to develop on track in fine motor and speech. We are working on crawling and she is inch worming herself around now. Fiona's personal space is shrinking. I heard her say to Whitney this morning, "STOP touching me!" I love hearing the normal sister stuff.
Another change in the past month or so has been that Whitney now goes #2 on the potty each day. One of her first words is, "poop". I think this is very funny and fantastic at the same time. It seems we have tackled the constipation monster.
May 16, 2009
May 14, 2009
Conductive Learning Center
We are glad to report that we were able to go to therapy this week at the Conductive Learning Center (CLC). Whitney and I were both overwhelmed by the possibilities of what we can now work on to achieve. I think we both were shocked by the thought of moving since she has not been able to move for 9 months. This is new and exciting ground we are treading on. I could feel Whitney's heart racing as we worked on all of our new 'tricks'. She did a very good job and I think she will get more comfortable as I add them to her daily routine.
Here is an idea of what we are currently working on:
-Sitting up independently from laying on her back.
-Sitting on her hands and knees for a period of time. (This is one of the things she is anxious about doing.)
-Strengthening her back muscles.
-Sitting with her back straight on a bench stool with her feet flat on the ground with and without shoes while reaching for -toys on a desk of sorts.
-Standing in her new shoes (AFO's) while holding on to a bar to balance herself. (another source of anxiety)
Yes, you read that right, standing! She looked so old to me. It was a very exciting and exhausting morning. We were able to get another appointment to go there next Thursday as well. We are learning to hold our plans loosely but the current plan is to go to CLC a few more times this month and in July. Our next step would be to join a parent and child session in September and then possibly every morning, 5 days a week, beginning in January when she turns 2. We have not figured out all of the details but I am sure they will fall into place as time goes on.
Needless to say we have had an encouraging week. Thanks for checking up on us.
Here is an idea of what we are currently working on:
-Sitting up independently from laying on her back.
-Sitting on her hands and knees for a period of time. (This is one of the things she is anxious about doing.)
-Strengthening her back muscles.
-Sitting with her back straight on a bench stool with her feet flat on the ground with and without shoes while reaching for -toys on a desk of sorts.
-Standing in her new shoes (AFO's) while holding on to a bar to balance herself. (another source of anxiety)
Yes, you read that right, standing! She looked so old to me. It was a very exciting and exhausting morning. We were able to get another appointment to go there next Thursday as well. We are learning to hold our plans loosely but the current plan is to go to CLC a few more times this month and in July. Our next step would be to join a parent and child session in September and then possibly every morning, 5 days a week, beginning in January when she turns 2. We have not figured out all of the details but I am sure they will fall into place as time goes on.
Needless to say we have had an encouraging week. Thanks for checking up on us.
May 4, 2009
8 Hours
We received some great news today on Whitney's hip growth. The doctor was optimistic about her progress. First she said we could take the brace off for therapy only. Matt asked if we could have a total of 3 hours off a day. She paused and after further examination said that we could have 8 hours! We were shocked. The goal is to get to 12 hours a day but what a great place to start. She did say that we need to see her in 4 weeks to check on how it is doing. If the growth is declining then we will need to increase the time in the brace. Thank you for your continued prayers.
This Thursday we will pick up her standing shoes (AFO's). It is so exciting to be progressing forward again. I already have phone calls in to get her back into therapy. I hope Whitney is as excited as we are!
This Thursday we will pick up her standing shoes (AFO's). It is so exciting to be progressing forward again. I already have phone calls in to get her back into therapy. I hope Whitney is as excited as we are!
April 16, 2009
Urology
Thank you for your prayers yesterday. The two specific requests regarding her kidneys were answered! Her kidney's have been growing at a normal rate and have no apparent scarring from the UTI's. Regarding her past UTI's our urologist is not convinced that they were 'true' UTI's. He showed me the lab results and the bacteria numbers. (I am learning a lot.) Other than the one UTI that she was hospitalized for, the others show 3-4 bacteria where there should only be one present. He suggests that the next time we suspect an infection we go it to have Whitney cathed so that we obtain a true specimen without other bacteria. In order to prevent future infections we will continue to keep her constipation under control, continue probiotics, and add a concentrated cranberry supplement called UNI-Stat.
Her bladder shows no signs of reflux but does show signs of leaking. Her sphincter muscle showed no signs of contracting. He does not have high hopes of her wearing big girl pants but did not say it was impossible. He summarized her as a work in progress and we will see where she is in 6 months time.
We continue to trust in our God, the healer, who is able to do the impossible. Exodus 15:26b " I am the LORD who heals you."
Her bladder shows no signs of reflux but does show signs of leaking. Her sphincter muscle showed no signs of contracting. He does not have high hopes of her wearing big girl pants but did not say it was impossible. He summarized her as a work in progress and we will see where she is in 6 months time.
We continue to trust in our God, the healer, who is able to do the impossible. Exodus 15:26b " I am the LORD who heals you."
April 13, 2009
15 Months
Her appointment with her orthopaedic doctor went well. It was a little hard to hear that Whitney is behind. Her hip has really slowed her down but I need to remember that it is worth it and she will catch up. The next step we are waiting for is to order standing ankle foot orthosis (AFO's) and a standing board. Basically, special shoes to stand in and a board of sorts with Velcro to hold her in a standing position. We plan to head in this direction once we get the okay from her orthopaedic surgeon. We hear from her again on May 4th. Please join us is praying that her hip develops so that we can move forward from here.
Today we saw the pediatrician for Whitney's 15 month appointment. Here are her latest stats:
Height - 31 inches (80th percentile)
Weight - 20 pounds 14 ounces (25th percentile)
Fiona at 15 months was 3/4 of an inch taller and one pound heavier. I love watching my girls grow and change in their own way. What a delightful gift they are.
Wednesday Whitney will have an afternoon of testing at the hospital for her kidneys and bladder.
1. Ultrasound - test of sound waves to examine the kidneys size and shape as well as the bladder.
2. VCUG - Insert a substance which will outline the size and shape of her bladder by x-ray which will detect reflux.
3. Urodynamics testing (CMG) - Determines how much the bladder will hold and detects abnormal bladder contractions, increased bladder pressure, and assesses sphincter muscle.
Immediately following the tests we will meet with the urologist to review the information.
Out prayer is that her kidneys have not scarred from her frequent urinary tract infections and that they are growing at a healthy rate. Please also pray that we will make the right decision for her care in this area after hearing the test results.
Today we saw the pediatrician for Whitney's 15 month appointment. Here are her latest stats:
Height - 31 inches (80th percentile)
Weight - 20 pounds 14 ounces (25th percentile)
Fiona at 15 months was 3/4 of an inch taller and one pound heavier. I love watching my girls grow and change in their own way. What a delightful gift they are.
Wednesday Whitney will have an afternoon of testing at the hospital for her kidneys and bladder.
1. Ultrasound - test of sound waves to examine the kidneys size and shape as well as the bladder.
2. VCUG - Insert a substance which will outline the size and shape of her bladder by x-ray which will detect reflux.
3. Urodynamics testing (CMG) - Determines how much the bladder will hold and detects abnormal bladder contractions, increased bladder pressure, and assesses sphincter muscle.
Immediately following the tests we will meet with the urologist to review the information.
Out prayer is that her kidneys have not scarred from her frequent urinary tract infections and that they are growing at a healthy rate. Please also pray that we will make the right decision for her care in this area after hearing the test results.
Gracious Advocate
How do you accomplish this for your children? In the last 15 months I continue to learn how to be my children's advocate. Fiona was easy and with Whitney I have to have all of my medical information at the ready. My mind is in constant filing mode as I need to remember appointments and information. Last week I realized that I had not heard back from one of Whitney's doctors. The receptionist forgot about rescheduling her. "You forgot my child?!" Is what I thought in my head, as my inner mother lion roared. I did not say that but responded firmly insisting that they fit her in quickly. I can now only hope I handled it correctly. I am so thankful that I have the time and energy to deal with these things and I just need to remember that we are her number one advocate and yes, mistakes will happen and that is what I am here for. I just need to be gracious.
Subscribe to:
Posts (Atom)