Day 6

Highlight- Whitney's AmTryke

School/ exercise/ Conductive Learning Center (We call it so many things these days) went fine overall. Whitney was a little uncooperative but we made it through. We continued to work on our new exercises and trying to improve on our skills.

We picked up Fiona and headed to go get Whitney's new bike. We put her on it to see how it fit and she loved it. I tried to take her off and she tightened her grip on the handle bars, once I pried her off she just screamed. I am glad she likes it! When we got home it went right down to the basement to reappear on her birthday next month.

Day 5

Highlight (: renewed motivation

Today was great. The lying program went fine and our individual program went fantastic. She we sitting on her little box a the parallel bars with one friend on one side and 2 across from her. She kept standing up (her idea) and sitting down with a plop. It was very cute. She was even smiling! I am so excited that my almost 2 year old is starting to think that maybe she wants to stand up. What a thrill. I was almost scared to be too excited or she might stop.

Another new thing was that she initiated was moving her legs up while 4 point crawling more today than I have seen yet. Progress is being made!

We began a few new excercises as well. One is standing straight up against the wall with ladder back chairs on either side of her for support. She was a little nervous and her knees buckeled a few times but for something new she did very well. The second new one is to teach her how to use her hands to scooch herself on her bum backwards to get around. This also strengthens her arms in the process. Her arms are a little too short yet but we are using a few short little boxes to bring the floor up a bit. The third one is pushing a stool and 'walking' on her knees. This gets her to swing her upper leg, strenghen those muscles, and it is a easier than walking.

At the end of the day last week and today I spoke with the conductor about a few goals for Whitney. I had mentioned to them last week that I would like to see her using a walker soon. She told me today that if we were not coming regularly that she would introduce it now, but since we have time we are going to take it. She explained how it is best to move slow, and take our time to strenghten her lower back and core as much as possible and teach her in stages. A large majority of spina bifida walkers walk with their lower back arched in and this makes thier bottom stick out. We want her walking in the best position possible. Whitney is blessed with no back deformities as of yet so, if we can, we want to prevent this from occurring. This conversation was encouraging and a good reminder to be patient, stop comparing, and to keep moving forward.

Last Week

I missed updating you all last week so I thought I would back track to update you and then tell you about today. Last week was a little tough and I think part of it was my attitude and not looking for a 'highlight' to share with all of you. So, I have recommitted myself for this week and next.

Day 1 (last Tuesday, December 1)
The day was a bit hectic. Whitney was the only returning student for the parent and child program so details needed to be figured out as to which potty was whose and how the order of the morning was going to flow best. There are 3 other children in Whitney's class, 2 boys who are almost 10 months old and one girl who is a little younger than Whitney and is her 'partner' for all intensive purposes.

Day 2
Daddy day! I took Fiona to BSF for the morning while Matt had the opportunity to take Whitney. He was able to see first hand what we are working on and doing. I am very thankful he was willing to take the day off to do this and now when I describe things he can understand a bit better. I think the morning seemed to go well. The other moms and our conductor are still talking about Whitney's daddy!

Day 3
Whitney woke up with a fever so I took her right to the doctor. Matt was able to bring Fiona to my sister-in-laws which made it possible for us to still make it to CLC on time. She has another urinary tract infection (UTI) so we started antibiotics and tylenol and tried to get some therapy in. Looking back it was a very unproductive day and I should have just taken her home but we survived the morning and they did not kick us out! She cried for the majority of the 3 hours...It was not a good day. So, I left there feeling like it was a failure and all sorts on negative thoughts assailed me. An afternoon of crying a bit, a good nap for Whitney, and we were on the mend.

Day 4
A providential snow day! I can not tell you how thrilled I was.

Best & Last

Today was our best and last individual session at the Conductive Learning Center. It was the best because Whitney gave 100% in the cooperation department. She had great endurance high kneeling today and stood up and down from a sitting position while holding onto a bar independently. She also was able to stand while holding onto a chair and picking up toys from the floor without any assistance. It was a fun day.

It was our last individual session as Whitney is almost two! It is strange because we began individual sessions when she was around 10 weeks old. We begin another parent and child session for three weeks this December. It is still up for debate if we will be doing our daily entry for you all. We will see if I am up for it. (:

happy thanksgiving!

Bye bye wagon

Today Whitney was fitted for an amtryke. It is a tricycle designed for children with varying disabilities. The bike we have ordered is a hand/foot crank model. Two main purposes of the tryke are to improve mobility and coordination. One goal for Whitney will be to break her habit of moving her legs simultaneously when she crawls. We were able to take a test drive down the hallway and both of us were pretty excited. I can not wait till spring when both of the girls will be on their bikes.

I once again realized how thankful I am to be near to fantastic health care. We are blessed with so much.

CLC went very well last week. She did an excellent job. It is such a great feeling to be progressing forward. It became pretty depressing in the past year not to be able to help her learn. It felt like time was ticking and there was nothing to do about it. I just keep thanking God that the hip continues to develop and praying that God will continue to equip me to be the best teacher and cheerleader that I can be.

The Hip is Developing

I am glad to report that Whitney's left hip is continuing to grow and develop. What a relief! The cartilage, which will later turn to bone, is half the size of her right but it is coming along quite nicely. We were told to continue 12 hour a day bracing for the next six months and then we will check to see if we can begin weening her from her brace. We also need to get a new brace as our current one is getting a little snug and has seen better days.

Did I tell you that our urologist said it was a good sign that she is getting so many UTI's? I had to remind myself of this as we went into the doctor on Monday to confirm my suspicions of yet another one.

Conductive learning therapy went well today. Her girlfriend was there which always helps to motivate. Whitney is becoming more aware of her feet which is fun to see. It is very normal for kids with spina bifida to forget thier feet when doing daily tasks simply because they do not feel them. So, we constantly draw attention to her feet to remind her of their existence. It may be working. (: She is also doing very well learning to kick her legs both while sitting and laying down. It is such a joy to watch her learn both cognitively and physically.

Update

Last Monday we had a check up for Whitney's eyes. She did not enjoy getting her eyes dilated but everything looked very good. She said that we do not need to come back until Whitney is 4! We are so thankful that these specialist appointments are getting further apart.

This Monday we saw the urologist. We had an ultrasound for her kidneys and bladder. He said that her kidneys are growing at a steady rate. I told him our potty routine and he was very encouraging. He said to continue what we are doing and that she is doing much better than he would have projected for her. He also encouraged me that it is a positive thing that she is getting frequent UTI's because it proves that her bladder is able to hold urine. He thinks that she may leak a bit but when she is older we may be able to go on medication to help with this. The only new part of our plan is that the next time she gets a UTI we will go on antibiotics for 30 days instead of 10 to ensure that the bladder has had a chance to heal. We will have another follow up appointment and ultrasound in 9 months.

Conductive Learning Center has gone well the past two weeks. Whitney is currently cutting 3 molars at once so she is a little crabby. We are continuing to build on what we learned in September and increasing in stamina. I also spoke to them about her urology appoinment since part of what we work on at CLC is potty training. They were very encouraged as well. We also talked about an exercise we can work on to strengthen her bladder muscles.

Next Monday we have an appoinment with orthopaedics to have an x ray of her hip. I have to admit I am a little apprehensive. Please continue to pray that the hip has grown over the past months so that we are able to continue therapy and move forward.

Follow-up session

We are planning to do 8 follow-up sessions over the next 2 months. The first 4 will be with Whitney's little friend and the last 4 will be one-on-one.

We have been doing some of the routine at home this week but I have to say she cooperates better there than at home. Whitney thinks it is fun to watch Fiona do them more than she likes to participate herself.

Today she was climbing, with help, up the small stairs. She maneuvered herself around off the bottom stair and onto the floor into a sitting position. This was quite the accomplishment and gives me hope that she is learning how to get around on her own and developing more courage to problem solve. She also stood with her knees straight and hands down flat on a 5"
box. This was also a new step as before she would not go down that low to the ground.

A few things that we are going to focus on this month is to teach her how to move her legs, while in a straight leg sitting position. We are teaching this by having her move her leg straight up and over, and to move her body while on her bottom. This will also help strengthen her weak thigh muscles.
The other new goal is for her to learn how to get from a sitting position to a kneeling position and back again on her own.

This morning before CLC (exercise school) Whitney had a doctors appointment.
Her back is looking great and we do not need to see him again until fall of
2011!

Next week we have Whitney's eye exam on Monday and then CLC later in the week.

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.

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

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.

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!

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.

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. (:

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!

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...

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.

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.

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.

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!

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.

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!

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.

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!

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.

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.

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.

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.

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!

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.

Happy Birthday Fiona!

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.

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!

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."

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.

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.

We are here

Yes, we are still here! I took a blog vacation and a real vacation since writing last. As many of you say to me, "no news is good news". This past week Matt and I took a vacation to Napa, Sonoma, and LA. It was a wonderful refreshing time to celebrate five years of marriage together. We saw amazing beauty in the mountains, vineyards, and the ocean. The girls did very well. Fiona was with her grand parents and I wonder if she even knew we were gone! Whitney was with my brother and sister-in-law and missed me a bit but received much love in my absence. What a gift to be recharged.

Whitney is growing and developing so quickly these days. This month she cut her first two teeth, said "ma-ma" and "cup" and had her first haircut. There is no new news on her hip growth. We continue to be patient and pray that it is developing. We are going to begin a new kind of therapy that we hope will put a little weight bearing on her hips to stimulate the growth plate. We continue to have a daily struggle with her bowel movements as her large intestine moves too slowly. We are trying a combination of Activia, Benefiber, and Miralax which seem to be helping. Next Thursday we meet with one of her orthopaedic doctors so I am looking forward to an update there. I will keep you all posted.

More Brace & Happy Birthday

Happy Birthday, Matt. Thank you for being such a wonderful husband and father. You are a gift.

The appointment today on Whitney's hip went okay. We will need to keep the brace on full-time for another 3 months and then reevaluate. We compared the x-ray from the beginning and that looks encouraging. The hip is definitely growing. However if you compare the x-ray from three months ago there are only slight changes. So, we are waiting for her body to kick in and ossify the cartilage above her femur. I am looking for a good picture to show you all what this looks like but I have not found a good one yet.

Enjoy your week.

MRI results

Wednesday afternoon we brought Whitney to the hospital for the MRI. We were placed in our own room and were told they were going to do a oral sedation. We were immediately thankful that she would not need an IV. The nurse let me give Whitney the syringe of sleeping fluid. I was thankful for this because for some reason, as the mom, I think I can do it better than the nurse. (: Then we turned the lights off and she was sopossed to just fall asleep within 15 minutes or so. She eventually fell asleep, woke up and fell asleep again. Matt and I went off to get a little food with pager in hand. She was supposed to sleep an additional 2 hours after the MRI to sleep off the affects of the medication. However, when we arrived back in our room Whitney was already awake. She proceeded to be fussy until bedtime. I am so glad that this behavior is unusual for her.

Thursday we went to the doctors office for the results. Her Chiari II is obviously present. It looks as though her spinal cord doubles over itself near the base of her neck. Very interesting to see. Since we have not experienced any symptoms or problems we do not treat it. Symptoms would include difficulty breathing or swallowing. There are a few other abnormalities in her brain but all of it is common for spina bifida patients. This was great to hear. I learned that all of spina bifida patients have a tethered spine but once again if there are no symptoms then we do not treat it. Issues may occur during large growth spurts. Such as when she is 3-4 and 11-12 years of age. So, we will worry about that later. Her shunt looks like it is operating wonderfully.

Thank you all for praying for Whitney. We are so thankful that the results were all positive. The next thing up ahead is February 2 when we see via x ray how her hip is doing.

Happy Birthday Whitney

Whitney turned one this week! Fiona continues to remind me that she is two and Whitney is one. It makes me think twice. They are both a delight and are very happy together. We celebrated with Matt's family enjoying cake and presents together. They were both excited about their new red wagon and yes, I gave Whitney a little frosting.

We started the year with another urinary tract infection (UTI). This is her third so far. Thankfully I suspected something before it got too bad. I was fearing that we would end up in the hospital again. We just finished one round of antibiotics and will start another for the next 6 weeks. This should enable the bladder to heal and prevent another one from forming soon. We also went to the pediatrician today. She mentioned that Whtiney's constipation may be contributing to the frequent UTI's. She prescribed a laxative and fiber for her. We will start that today and hope for good results.

Whitney's latest stats: 85th percentile for height (30 1/4") and 60th percentile for weight (21lbs-4 oz). Looking good.

We have an MRI scheduled for next Wednesday. Please pray that the sedation goes well. Specifically that they are able to get the IV in as she is a hard poke. Also, that it shows her Chiari II malformation is not hindering the flow of spinal fluid, that her shunt is continuing to preform correctly, and that her spine is not becoming tethered. We are thankful for all of you.

Pictures

We thought that we'd start the year with a recap of last year (or at least through October) in pictures.

Whitney, a few days after coming home


1.5 months


Baptism


Fiona & Whitney


3 months


Fiona "washing" dishes


4 months

6 months

7 months

Before surgery on her hip

The cast

From another angle

With Great-Grandma

Merry Christmas

I can hardly believe it is the end of the year! We have been so spoiled not to have any appointments, tests, or surgeries during this holiday season. We are so thankful. Both girls have enjoyed thier new toys and it has been fun watching them play together.

Whitney is doing great although a little crabby from teething. Still no teeth and her 1st birthday is next Wednesday! Our constant daily battle is her constipation issue. I need to assist her with her bowel movements more times than not. We will have her one-year appointment with the pediatritian next week so I will inquire more of what can be done for the present and future. She sits up very well on her own, can hold herself up on her knees with her arms locked and can move backwards when she is on her tummy. These are all exciting things for us. We continue to massage her legs and feet a few times a day to help increase her circulation.

Brace- She continues to wear her brace full-time. We have an appointment in the beginning of February to check how her hip is progressing. Please continue to pray that it is growing sufficiently enough that we can go to part-time wear. This would enable her to go back to a more intensive therapy.

Great Month

I thought I would just let you know how well we are all doing. It has been a great month with no doctor appointments and much travel. We were out of town as much if not more than in town this month. Taking advantage of each moment together. We first drove to Cincinnati. Matt had to be there for work so the girls and I saw the zoo, aquarium, and relaxed at the hotel. The following week we were in Chicago. We stayed downtown and had fun shopping and saw family and friends as well. We are so thankful we were able to travel with Matt. Then we went to New Buffalo with some old college friends. The girls are great travelers!

Good/Bad

We had a hip appointment this morning. Good news is that the hip is still in the socket! It is continuing to develop. We are so thankful to receive good news that her body is continuing to respond. I was reminded today as I looked at the x-ray how detailed our God is. He made our bodies in an amazing way. They are so complex. She also said that we do not need to go in for another 3 months. I can't believe it. Wonderful news.

On the flip side, for the next 3 months we are to keep the brace on at all times and continue to only remove it for a maximum of one hour a day. Therapy will need to take a back seat as her hip develops. Hopefully we are able to catch up when Whitney is able. I just have this strong desire to want the very best for her and sometimes we can't have it all. (:

Enjoy the day.

Neurosurgeon appointment

We met with the neurosurgeon this morning and reviewed Whitney's CT scan that we had at the hospital a few weeks back. The shunt seems to be doing great. We are scheduled for a MRI for January which we will then use as a baseline for her for the future. Unfortunately she will need to be sedated for this since it will be 45 minutes in length. The CT was only 5 minutes. I do not care for sedating her but I will think of it again in the new year. Not something to worry about now.

We have started to think about beginning Whitney's alternative therapy again at the conductive learning center. We have taken a break since her hip surgery and have just been doing physical therapy. They unfortunately can do very litlle with the brace on and the brace is only allowed off one hour a day for bathing etc. We see the orthopedic doctor next week concerning her hip and in the hope that her hip is continuing to develop I will ask if we can begin to have more time with the brace off. We do not want to miss other developmental possibilities such as crawling and standing.

Fiona Wants Purple

Fiona informed me this morning that she wants a purple brace. "Whitney pink, Fiona purple brace" She was very serious and I had to smile. It also reminded me how thankful I am to have a healthy daughter. I am so thankful that Fiona does not need a brace and that she was able to point this out to me. There are so many things to be thankful for.
Just thought I would share. Have a wonderful week.

Appointments Gallore

We have had a few too many appointmnets this month. Thankfully it is drawing to a close and we only have one so far next month. Just in time for the holiday season. I need to back track a little to update you.

Pediatrician: 20 lbs and 4 ounces and 28 inches long. She is growing well and seems to be on track with language and fine motor development. We were thankful for a good report after her recent hospitalization.

Urologist: We had 2 appointments. The first at the hospital for an ultrasound. They looked at Whitney's kidneys, both front and back, and her bladder. The second appointment was this past Friday where we saw the doctor and were given the results of the ultrasound. Her kidneys are healthy and it appears that no damage was done during this last bladder infection. Her kidneys are growing at an appropriate rate. We are very thankful for this report. She will have many urinary track infections to come but in six months we can start a special yogurt formula and a cranberry supplement to try to control this.

Plastic surgeon: He checked the scar on her back and thought all looked well. The cast had caused her skin to break down along her scar but it has healed up nicely. We do not need to see him until next year! This is great news. I am daring to hope that the appointments are starting to become fewer and fewer between.

Next week we meet with our neurosurgeon and he will check her shunt. I hope he will go over the MRI we had while we were in the hospital. I am curious to hear more information. The first week of November we find out how Whitney's hip is doing through x ray. Please continue to pray that the brace is able to hold her hip in place and that the hip continues to form correctly.

Praise

The cast is off! We can hardly believe it. I have been smiling all day. Whitney had an x-ray with the cast on to check her hip and all looked well so we proceeded to remove the cast. I was nervous to see what was beneath the cast but the cast itself and her skin looked better than what I had hoped. We are so thankful! The first thing Whitney did was put her toes in her mouth. I think she missed them. We then had an x-ray taken with her brace on to see if the brace was able to keep the hip in place. It worked. The hip had grown sufficiently in the past 6 weeks enabling the brace to do its magic. Whitney and I began dancing a little in the exam room and our doctor reminded me that this is progress in the right direction but we are not out of the woods yet (I still wanted to dance). We compared a before and after x-ray and I was able to see that the cup of her hip is no longer as straight as it once was. It still has a way to go but it has started to develop! Our next appointment is in 4 weeks when we will check how it is doing. Whitney is to wear the brace at all times until then when we can reassess. If the hip does decide to come out of socket again there is little to nothing we can do. Thank you all for your diligent prayers and please continue to pray that God, in his healing hand, will continue to form our little Whitney's hip socket.

One year ago we were in Philadelphia at the beginning of this journey. Thanks for walking with us as we continue.
Matt, Susan, Fiona, and Whitney

1 More Week

One week from today we find out how the cast has been working. We will either leave the doctor's office with a cast or a brace. Please pray that we will not have to put on another cast and that Whitney's hip will heal in the correct location.

We saw the eye doctor for the first time yesterday. They were concerned about her optic nerve and this was more of a precautionary visit. Her hydrocephalus put pressure on her eyes before her shunt was placed. Thankfully her optic nerves look normal and are developing well. She is a little near sighted which is common for her age and should go away by the time she is ten. The doctor did a wonderful job and Whitney was only slightly uncomfortable when they dilated her eyes.

Thankful

It is time to remember what we are thankful for:

1. Loving family
2. Solid marriage
3. 2 beautiful girls
4. Helpful church family
5. City with excellent health care
6. Great house & neighborhood
7. Joy & peace from the Holy Spirit
8. Job & insurance
9. Vacation next week
10. Whitney's skin infection clearing up
11. Fully operating shunt
12. More than 1/2 way done with the cast

There is so much. What a mighty God we serve.

Time Stood Still

Last week we were battling Whitney's constipation. She is predisposed to this as we are still unsure as to her control over her bladder and bowels and were prescribed a laxative. (Her skin is doing much better, by the way.) Sunday afternoon Matt and Fiona left for up north. Matt had to work up there this week and we thought Fiona would enjoy a few days with her grandparents. Little did we know Whitney would begin vomiting on Sunday night. She became fussy and lethargic as well. These are 3 of the signs for shunt failure so Whitney and I headed to the ER. Thankfully Fiona was all set and in great hands. That is the beginning of God's providence shown to us.

We were registering at the front desk of the ER and Whitney promptly vomited again, which was perfect timing. We were able to bypass the waiting room and triage and head right in. We began many tests. The stress level was pretty high at this point as we were not sure what we were dealing with. This is also when Whitney's bowels decided to move. I will spare you the details and just tell you that the smell was bad enough for them to shut the door because people passing our room were asking what that smell was. I also had to apologize to each doctor and nurse who came in. Through this I was distracted with trying to keep the cast clean, Whitney content, and Matt updated via text message.

I was notified that Whitney had a urinary tract infection and they were going to consult the neurosurgeon as well. They admitted us around 2 a.m. Monday morning, after 6 hours in the ER. Needless to say Whitney and I did not sleep very much and she just wanted to snuggle. We continued to snuggle for a couple days. (: Tests continued and we also were able to complete the CT scan without anaesthesia. Through this we learned that the shunt was operating wonderfully! We are so thankful that we did not have to undergo another surgery.

Time went very slow as Whitney and I had a lot of 1 on 1 time together. I did not have too much energy to update people so our visitors were few and far between. Thankfully breastfeeding moms are given meals and the staff was wonderful with keeping me stocked with many forms of caffeine. I did not leave her side and we continued to snuggle.

Many antibiotics, observation, and tests later we were given the option to go home. They still were not sure which antibiotic they wanted to use for her but they were willing to work with our pediatrician. So, Tuesday early afternoon we headed out of the hospital. Two women from church were there to help me discharge and out to the van. I am so thankful that God is in charge of the many details.

We did not go directly home. First, we needed to stop and get Whitney's cast expanded as she was growing out of it. Secondly, we headed to the pediatrician to receive and 12 hour antibiotic shot to tide her over until we knew what they wanted to prescribe for her. THEN we headed home. This is when time began again. I opened the door and everything was just as I had left it.

We are now beginning our normal routine all in perfect timing as Fiona is coming back this evening. What a week.

Sensitive Skin

Yesterday as I gave Whitney her daily inspection and bath I noticed she had a rash under her cast on her back. The rash is on the left of her back and all over her scar from her first surgery to repair her spinal cord. When I called the doctor yesterday she wanted us in early this morning. We received some cream which seems to be helping a bit. She said that if it does not clear up soon then we would have to remove the cast to prevent further breakdown of her skin. Please pray with us that her skin will heal quickly and that God will protect it from future infection.

New Routine

How are we? I would say we are doing well. Whitney is tolerating her cast quite well. She was a little somber for a few days but she is now back to her good natured self. I am learning better and more efficient ways to care for Whitney each day. I can now change her diaper while she is in her crib in a dark room. We are also all getting used to waking up a few times a night to change her diaper and position so that she does not get pressure sores from the cast. Matt, Whitney, and Fiona now sleep through this new routine. (:

I was blessed to have an 'old' friend come and help us for a few days with this new adjustment and having Matt help this weekend was wonderful as well. We are just taking things day by day and figuring out how things work.

Whitney weighed in today at 21 lbs. with this heavy and awkward cast on. We also had a x ray taken and her hip is still in its correct location! We have our next appointment with this doctor in two weeks to see if there is need to split the cast. Babies grow so quickly that sometimes the cast becomes too tight and they need to split it a little. Then we will see this doctor during the first week of October to have the cast removed and try her brace again. Our hope is that the brace will be able to hold the the femur this time. If the brace does not work then she will suggest putting another cast on for another 6 weeks. We will cross this bridge when we come to it.

Thursday we see Whitney's other Orthopaedic doctor for a check up and see how her AFO's (ankle foot orthodics) have been working on her feet. We hope to get Whitney's brace ready for October on Thursday as well. The next thing on the horizon is an appointment with the ophthalmologist (eye doctor) at the end of the month.

Hip Spica Cast

We decided that it may be worth a try to put on a cast. Matt and I were able to pray & discuss this new information on Thursday night and we came to the conclusion that we did not have enough information to make an informed decision. Friday morning I contacted a few of Whitney's specialists in town to get more thoughts on the matter. They all responded very quickly and by mid afternoon it was quite apparent to us as to what decision we should make. The possible pros seemed to outweigh the cons. We are thankful we had to weekend to process this and come to accept the facts.

Our appointment was at 8:30 this morning at the doctor's office. Usually they bring children to the hospital to sedate them but they thought Whitney would be calm enough. She did a great job. We picked out a purple cast and got started. I did have to pull a few tricks out to keep her occupied. Thankfully I did not have to use my emergency trick which would have been to sing. There was the doctor, 2 nurses, and I assisting in the process. It probably would have been a great picture. I brought Whitney's AFO's along and the doctor was willing to stop the cast just above her knee so that she could still use them at night. They also used a gortex liner which looked like a shower curtain when they were putting it on. This will help tremendously if we have any blowout diapers. I need to frequently change her diaper to keep things as dry as possible. She has a smaller size diaper stuffed into the cast with a larger one over top of the cast to hold it all together. I was thankful to discover that she is able to wear an 18 month onesie over top. She is currently in 9 month clothes so, we made a big size jump today. The doctor took an x-ray before we left to check if the hip was in the correct location and it was. We will have another x-ray next week to check again. Please pray that it remains in place and the body will begin to accept it there. Meanwhile my mother-in-law was helping get a special car seat installed in our van while my father-in-law took care of Fiona at home. It all worked out very well and within 2 hours we were headed home with a tired little girl.

It seems that additional care for her will include, frequent diaper changes, changing body position every two hours to eliminate sores, bathing, and transporting her as she is now very awkward to hold and carry.

She is currently taking a nap with her sister and hopefully will begin to accept her new 'outfit'. Thank you for your prayers for us this weekend. We were a little stressed but I think this morning went better than expected and we feel peace about this decision.

Disappointing News

We had an appointment yesterday with Whitney's surgeon and after looking at the x-ray saw that the brace is not giving enough support to hold the femur in the correct location. She has suggested that we now place her in a body cast for a period of six weeks and then reevaluate for a possible additional six weeks.

This has been very disappointing news for us to hear as we were hoping that this brace and surgery would be effective. We are concerned with the breakdown of her skin under the cast, her loss of muscle tone, and her developmental progress. There is a less than fifty percent chance that this cast will work and it is hard to know what decisions to make for our dear Whitney. If the cast would work this would be very beneficial to her in the long run for walking and to hopefully avoid scoliosis (curvature of the spine).

Please pray for us as we make this decision as we strongly desire to make the right choice for the well being of Whitney and need God's wisdom. It is comforting to know that our God is a God of all knowledge and He will sustain us. We are open all and any encouragement today. (: Thank you once again for caring for us and Whitney, we covet your prayers.

Going Home

Whitney's doctor just released us to go home! Whitney will be ecstatic to lose the IV in her right hand and regain access to her comforting thumb.

As Susan mentioned, the surgery went well. It lasted about an hour, and when we got into the recover room, Whitney was crying and ready to be held. She had that unique cry that told us that she was scared and disoriented. The anesthesia is a real bear. The doctor showed us x-rays that demonstrated that Whitney's leg is in the hip after surgery. Now we pray that the pelvis responds and the hip socket develops.

Last night was a bit rough. Whitney was getting used to her brace and feeling a little discomfort from the surgery (the pain and swelling have been rather mild). At about 10:40, after we had settled her down twice, the IV pump started beeping for no apparent reason. It took the staff (who are exceedingly polite) about an hour to figure the problem, but which time Whitney was disgruntled and upset, and her dad was too. Fortunately, she snuggled back to sleep on my lap and slept relatively well for the rest of the night.

This morning, she seems to be her normal self, smiling and babbling away. The doctor was happy with how her incision (it's very small) looked and ordered our discharge. It will be nice to get Whitney back onto a normal schedule.

After the surgery, Whitney will be wearing a brace for a few weeks to a few months. Longer is actually better here--it means the hip is developing, so the brace is providing additional support. She'll wear it 24/7 for the next week until we follow up with the doctor. We should know next week whether the hip is responding.

We are so blessed that the surgery went well and our only problems were minor inconveniences. We praise God that we are being discharged on schedule and heading home, and we are praying that God will cause her hip to respond. It's amazing how many things have to go precisely right in the right order for a baby to develop into an adult, and yet we take it for granted.

quickly

A quick update for you. Thank you for your prayers today. The surgery and recovery went well. It has been a long day for us all. There has been much stress and little sleep. Thankfully we had a few visitors throughout the day to distract us. Matt is currently at the hospital with Whitney and I am home to get a few hours sleep and then we will switch. We will write more details later on.

Whitney's Hip Surgery

As Susan posted a few weeks ago, Whitney will, Lord willing, have surgery on her left hip next week Friday. I had no idea, but when babies are born, they do not really have a hip socket. The ball joint between the pelvis and the femur begins developing around six months. The ball on the head of the femur is cartilage. When the cartilage comes into contact with the growth plate on the pelvis, the cartilage begins to turn into bone (ossify), and the pelvis begins to develop around the head of the femur. Whitney's right hip is developing properly, but her left hip is not because the femur is not in contact with the pelvis (i.e. it is dislocated). The doctors hope that by cutting one of the tendons in Whitney's hip, it will relax her hip and permit the femur to come into contact with the pelvis. The doctors believe that there is about an even likelihood that the surgery will be successful.

The fact that Whitney's hip is dislocated would not be a major issue if her right hip was also dislocated. But the imbalance created by having one hip in the socket and the other dislocated hinders walking, standing and sitting. The possibility of significantly improved mobility for Whitney made this surgery worthwhile to us.

The surgery seems relatively simple compared to her shunt and back closure surgeries in January. Nonetheless, we'll be staying overnight at the hospital. Please pray that the surgery is successful--the doctors have said that they'll know within a week whether it has triggered the appropriate development of the femur and the pelvis!

After surgery, Whitney will wear a brace to stabilize her hip while the tendon heals (it will grow back together, hopefully without as much tension). We have the brace already. Apparently, it's a big deal that it's pink. Our surgeon's office had not seen one in pink before. We hope to post some pictures of Whitney wearing it (we have it already) later this week.

The latest

This morning Whitney had a 7 month check up at her pediatrician. I love this doctor because she is so encouraging and sincere. Whitney is now 18 lbs & 1 oz and almost 27 inches long. She is following the 70th percentile for both height and weight. She is ready to make the move out of her infant car seat and into the 'big girl' seat. We were told again today that she is developmentally ahead which is music to my ears. Shots were uneventful as previously however now I am getting used to her lack of response. Now I may need prayer for when I bring Fiona for her 3 year to prepare me for the screaming. (:

We also went to a summer program for the children at Conductive Learning Center. It was fun to imagine Whitney in a few years being part of that program. It was also great to see so many families and a healthy reminder that we are not alone in this journey.

I received a call today that the new hip brace has arrived. We will get it fitted on Monday morning and have a pre-surgery appointment on Tuesday morning to prepare for the big day.

Mommy & Whitney (and new picture with Fiona)

We have had a number of requests for photos, but our hard drive is full, so we cannot download our pictures from our camera. This picture is from last month at a friend's cottage. Susan doesn't know that I (Matt) am posting it.

Pride

What is spina bifida teaching me? That I have some pride issues to deal with. I have been enjoying this 'honeymoon' stage, the general public not knowing that Whitney has spina bifida. She appears to be a happy, cute, healthy, baby girl and no judgements are made. Having the surgery also means having a hip brace for an extended period of time. I have had to work through this and determine that in large part it has been my pride standing in the way. It is hard not to care what other people think. I hope that I can continue to learn and grow not only with this experience in my life but also with many others. I have a long way to go. Needless to say we have decided to give Whitney the 50/50 chance that this may work. If it works it would be a huge benefit to her long term. We are planning on a 7:30 a.m. surgery on August 15th. Her new hip brace is being fitted this Thursday and we should be ready to go. Please pray that our other fears would also be put aside as we prepare for surgery.

We have had a few other appointments recently and all is well. In therapy we are working hard on rolling over more and sitting up. Hopefully we can get a little further along on these two before surgery. Recovery and the addition of the brace may set her back a little.

Thanks for thinking of us.

Hip News

We had our second opinion to discuss Whitney's hip on Thursday and Matt was able to join us. The visit went well as we peppered the poor lady with questions. We also had another x-ray taken as she was unable to feel the hip correctly and that was helpful to see where it is currently. We are in a crucial time frame as her hips have not yet fully developed. Her right hip is on the right on course of development however her left hip is not. They hope for a 20 some degree for each hip socket. Her right is 17 which is good and her left is somewhere in the 40's. It is also very important that she is as balanced as possible as we look to the future. We are still having conversations about this surgery. The tentative surgery date is set for August 15th. We are leaning towards doing it but have not made the final decision as of yet. They would be severing a tendon in hopes the body would 'repair' itself and the growth plate would continue to grow with the hip in place. She would have a hip brace for the extended future as long as it seems to be working. If it does not work then there would be no reason for the brace. We would not need a cast and for this we are thankful. Please pray with us as we continue to make decisions on Whitney's behalf.

Clinic

We had a great experience at our clinic appointment. I did not know what to expect going into the day so we were the first to arrive. I just wanted to be prepared. We were put into our own exam room and everyone came to us. It was excellent. I brought a bottle of water and a small snack for myself and hardly had time to eat it. We ended up seeing about 10 different people and they just kept filtering in. People ranging from an orthotist to a social worker. There was someone obviously behind the scenes making things go so smoothly. We were also able to get Whitney's braces (AFO's) in the same visit which saved me a trip. The best part of the day was having a few odds and ends questions I have had waiting for someone to answer and I am happy to say they were answered. Overall a wonderful visit and I am so grateful to be living in a city that has so much to offer Whitney.

Over due update

I have been dragging my feet updating all of you. I apologize for that. My mind has been processing and processing some more. I may be thinking too much. We had an appointment at the beginning of the month at the Orthopedic surgeon office. We started with having x rays which we have not had since Whitney was born. Unfortunately they showed that her hip is out of socket on her left side and seems to spend the majority of the time out not in. Seeing the x ray film was a blow to me. This is very common for those with Spina Bifida because of their muscle structure or lack there of. I knew this but to see it on your little girl is another thing. Our doctor has recommended a surgery/procedure to lengthen a tendon in hopes that the hip will migrate back in. She would have a hip brace to help with this. The surgery/procedure has a 50-70 percent success rate. She also suggested that we get a second opinion which is now scheduled for the first week in July. If we decide this is best for Whitney it will happen in the next few months. This is a hard decision to make not knowing if it will help. When we look long term it is important that she is balanced to eliminate other issues that could come into play such as scoliosis. Much of what we do now is preventative.

The other addition we have is that she was fitted for her first Ankle foot orthotics (AFO's) This is another one of those things that is not uncommon. She can pull her feet up at the ankle and rests them straight up. These will force her feet in a downward position. She will only have to wear them during naps and during the night. For some reason this was hard for me to process as well. I love her so much that I strongly desire what is best for her. Accepting her differences is all part of this process and I have thoroughly enjoyed this honeymoon stage of just enjoying her being a baby without many props.

Tomorrow we have a clinic where all of the doctors come to one location and you basically have an all day appointment going from doctor to doctor. It seems like a very efficient way to do it so I am excited to go. I may not be excited at the end of the day tomorrow. (: The waiting room will be filled with West Michigan Spina Bifida children. I will let you know how it goes. We will hopefully receive our AFO's tomorrow as well.

Stats & Shots

Whitney is now 15 lbs and 8 oz which is in the 65th percentile. Her height is 25 3/4 inches which is in the 75th percentile. We are so grateful that her growth is right where it should be. She is ahead a few months cognitively and with her upper motor skills and her legs are obviously behind. So, we have much to be thankful for. The shots went as the first time. I was prepared this time around and it went fine. Thanks for checking up on us.

Neruosurgeon Appointment

We had a good report again yesterday at our appointment. Whitney's shunt seems to be operating as it should and he said that we can wait 2 months to see him again. I just love to hear that! When she turns one we will have a CT scan taken to be our base line scan for the future. I mentioned to him that she has been in a growth spurt as of late and has been a little more cranky than normal. He suggested that she may be teething as well and he is right. I was not even looking for that because Fiona's teeth came in so late. They are so different from each other. I think they have conspired together to keep us on our toes.

We see our pediatrician on Friday so I will keep you posted. She is going to receive shots again. We will see how that goes second time around.

Progress is seen

We began this 'new' therapy not knowing what to expect and thinking we would try it out. Well we are happy to report that we have already seen some improvment. Much of what we do is stretching and massage. We have also been showing her how to roll over and going through the crawl motion. The first sign of improvment was last week. When she lays on her tummy I bend her knee to stretch her quad muscle and her leg has been like a little wet noodle then one day she began to resist me. It seems that her brain is catching onto the motion and as soon as I feel a hint of muscle reflexion I drop her foot so she can sense cause and affect. I am not sure I explained that very well... The other exciting thing is that she rolled over yesterday. This is important in the fact that we want to keep her on track developmentally and we are so excited about any new 'trick' she has for us.

Fiona Turns Two

We now are proud parents of a 2 year-old. Her birthday was last week Friday on the 16th. We had a wonderful time celebrating with both sides of the family and even a cupcake with Fiona's neighbor friend. She is at such a fun stage of learning to communicate and testing the waters of independence. She continues to be our delightful girl and I think her biggest fan is Whitney. Whitney immediately lights up when Fiona talks to her. We are blessed.