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.

Conductive Learning Center

We are pretty excited to be involved in this program. It is great to connect with another place that seems to know quite a bit about spina bifida. We have added many new stretches to our list. Whitney does not seem to mind them too much. We are doing them 2-3 times per day at home and going to the center once a week to start with. Their goal for Whitney is to stay on track developmentally. This means that instead of her sitting up whenever, which could be when she is 1, they get her to sit up around 6 months like normal. The short term goal is to increase her circulation and for her to kick her legs more. The long term goal is to potty train her and have her walking with a walker. It seems to me that her goals are realistic we just need to help her reach them. I am excited to watch Whitney continue to develop and grow. I know God has big plans for her life.

Catch-up

It is time to catch everyone up on Whitney. The urologist appointment went well over all. It was a little discouraging. What it boiled down to was that there are two extremes: catheter every 4 hours the rest of her life or constant bladder infections, of which neither is good. It took me awhile to not look at the extremes and to think of it in terms that Whitney will fall somewhere in between. We will discover this overtime and in the meantime we do not have to cath her which is great news. We did discover that she does have her first bladder infection which we have begun to treat.

We also had an appointment with the plastic surgeon. This went really well. Prayers have been answered and her skull is not fusing together prematurely. For this we are very thankful. Whitney's head shape is doing great as well. Her heard was beginning to get too long as a result of being on her side for the first months of life. We have had her sleeping on a special pillow to minimize this, which she did not appreciate. She was happy to hear that she is no longer in need of it. One less thing to worry about.

The latest news is that we had Whitney assessed by the Conductive Learning Center which just happens to be 5 minutes from our home. A friend had mentioned this to us before Whitney was born but our plates were full at the time. Conductive learning is an alternative physical therapy which was founded in Hungary in 1945. It is very common in Europe and is still getting a name for itself in the US. We are still learning all that is involved but we have decided to begin the program and see how it goes. This involves going there once a week for an hour and will increase over time. They mainly work with Cerebral Palsy and Spina Bifida children to help them become as independent as possible. Our first appointment is tomorrow. We are so thankful that this is available to us near our home. There are families that have moved here and others who fly in frequently for conductive learning. Here is the link http://www.aquinas.edu/clc/

Thank you for checking up on us and keeping us in your prayers.

Wonderful

Whitney is now 3 months old and we are doing wonderful which is why we have not posted. Just to let you know, it is a good sign when we do not post. (: All is well. We did have an appointment last week with the neurosurgeon and it was very encouraging. He reminded me of the signs of shunt failure which was a good reminder. Because things have been going well I have not been stressed about her shunt and honestly do not think of it much. So, he encouraged me to continue to be observant. A healthy reminder.

Today we went to the hospital to have a renal ultrasound done. This was an ultrasound of her bladder and kidneys. I tried to 'read' the ultrasound while it was being done but unfortunately I could not decipher what I was looking at. Wednesday we will go to the urologist and he will interpret them for us. My understanding is that they are checking to see if any urine is backing up into the kidneys and if so how much. I will tell you more later this week. She has not needed a catheter up to this point so our prayer is that we would not have to begin and that her bladder and kidneys would function properly.

4 years

Today marks our wedding anniversary. As we look back on the past 4 years it is amazing to see all that God has taught us through each other including this new growth experience. I think I can speak for us both in saying we are very thankful for eachother and knowing there are many challenges ahead in our marriage, dedicated to walk through them hand-n-hand. Marriage is a gift, isn't it?

Bittersweet

Whitney had her two month appointment at the pediatrician today. This means that she recieved shots. I was curious to see if or how she would react them. She did not react at all. I think she may have flinched a little with her right thigh but I could have imagined it. I wanted her to feel it so badly. When Fiona was 2 months old I remember crying because it was so sad to see her in pain and with Whitney I cried because she did not feel anything. I think that if God blesses us with another healthy child I will be happy and thankful when he or she cries.

Overall she received another positive report and for that we are very thankful. She now weighs a whooping 11 pounds and 12 ounces and is 23 inches long. This puts her in the 75th percentile in both length and weight. My many questions were answered and my mind was once again put at ease.

We have a little break again with the doctors and then we are hit hard in April. We will keep you all posted.

Two Months Old

We pause today in thankfulness. Thankfulness to our Heavenly Father for bringing Whitney so far in two months time. He has been so good to us protecting her from every angle:

1. Back surgery
2. Shunt Surgery
3. Weeks in the hospital
4. from infection in her back incision
5. from failure of her shunt
6. from many virus' this time of year
7. from her mom's flu
8. from her sister's attacks

I am sure there are many other ways that I am forgetting. God has been so faithful to us I wonder why I still worry. We are so thankful for our little gift, Whitney.

2 Doctor Appointments

I have been a little behind on updating you. My excuse is that I had the flu last week. Thanks for praying for Whitney's protection. We are so thankful that the virus did not spread to anyone else.

Last week we met with our plastic surgeon. Her back is looking great and there is no concern there. She also is now able to lay on her back. This is great news for Whitney's comfort. It also confirms for me that all is well with her incision. He wants to see her back next month to check her skull. He is concerned that her skull may fuse together too early. This would cause her brain to run out of room to grow. This is something that can happen when a newborn is shunted. The skull bones are somehow tricked into thinking that its job is done and fuses together.

This week we met with Whitney's neurosurgeon. He came to the same conclusion about her skull and also reassured me that this does not always happen but it is something to be aware of. This calmed my nerves about this a little. If it does fuse early we will have to have another surgery but we will pray that her skull fuses together at just the right time. Before our appointment Whitney had a ultrasound of her head and we viewed the results at the doctors office. I love technology! No more waiting 2 weeks for results. Just go down the street and have them explained as you look at them. We looked at the images from her last ultrasound right before her shunt was placed. The difference between the two was amazing. The first on had two huge black spaces where her ventricles were and in the other they we smaller than a pea. I am truly amazed.

We have next week off in the doctor appointment area. A much needed break.

February: Month of Firsts

Whitney has had a big month. She has begun to roll over, smile, and sleep through the night as of Sunday the 24th. I think that being the star of the show Sunday tired her out enough to begin a great new tradition: sleeping. The baptism went wonderfully. Fiona was a little restless sitting up in the front row but with a little sweat we made it through. While we were up front Fiona wanted to be baptised as well but thankfully we started singing a song and she forgot about it. The reception was a lovely time of fellowship together, celebrating Whitney, and a chance to thank many people who have been a great support to us these past several months.

Celebration

We could not wait 5 more weeks to have a party for Whitney. So, we are bending the rules and bringing her to church on Sunday night to be baptised and have a reception after. We wanted to celebrate her birth and the gift that she is to our family. Hopefully, she does not catch any viruses flying around the sanctuary.

All is well at our home. We are settling into a nice routine. Matt will be out of town for the majority of the week next week for work so my wonderful mother-in-law is coming to save the day once again. This coming Thursday we have an appointment with Whitney's plastic surgeon. He will check her back incision and hopefully tell us that we can start laying her on her back. (Whitney tells me that she is tired of being in her bouncy seat crooked.)

Good Report

The weeks are flying by and I can't believe Whitney is going to be 6 weeks old on Monday. We were blessed this week again by the presence of Matt's mom. She was only going to come for a few days and ended up staying the week due to weather. I love the snow!

We had an appoinment at the neurosurgeon this week. He was very encouraging and reminded me that every week and every month without an infection is a milestone. Her incisions look so good that I didn't think infection was a great risk any longer. He said that infection can fester for months and not show itself right away if bacteria got in her body during any of her surgeries. Needless to say please still pray that she is continues to be infection free. I asked many questions, as I am sure every mother does, and I was reassured on all of them. I still worry but I am not crazy about it...at least I don't think I am. We scheduled a head ultrasound for early March to check on how things are working with the shunt.

The physical therapist came for her weekly visit. As you many remember Whitney's lesion on her back was located at L-3 to L-4. This tells us aproximatly which nerves were damaged so we know what the outcome looks like is regaards to the future. She noticed that she has more movement on her left side and stated that she thought that her left side function was the equivalant of an L-5! This means that she has more nerve sensation on this side. I did not know that there was a possibility for the sides to be different but the nerve damage can be more severe to some nerves than others. We were greatly encouraged by this and look forward to seeing how else God surprises us.

We are now halfway through our incubation period at home. 6 more weeks! Please feel free to visit if you are healthy. I thrive on the adult interaction. (:

Whitney Update

Whitney visited the pediatrician earlier this week. Great report. She now weighs 9 pounds, 4 ounces--she was 8 pounds, 1 ounce at birth. We are pretty excited.