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.
June 19, 2008
May 30, 2008
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.
May 28, 2008
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.
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.
May 24, 2008
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.
April 24, 2008
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.
April 21, 2008
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.
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.
April 7, 2008
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.
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.
March 19, 2008
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?
March 17, 2008
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.
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.
March 7, 2008
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.
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.
March 5, 2008
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.
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 28, 2008
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.
February 23, 2008
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.)
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.)
February 16, 2008
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. (:
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. (:
February 8, 2008
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.
Wheelchair Backflips
A friend of mine just told me that ESPN was running a story today about a teenager with spina bifida who does backflips in his wheelchair. The story is encouraging--click on the headline above to see it.
February 2, 2008
Happy Birthday Matt
Matt's birthday was Saturday. We had a small celebration for him while his mom was still here. We have been home now for two weeks. It has been wonderful to have us all under one roof and not driving back and forth every day. Whitney has adjusted well and is a very good natured little girl. She wakes up twice a night and usually lets me go right back to sleep.
Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.
As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.
Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.
We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.
Fiona is also doing well. Her daddy was home with her for the first week home and grandma came this past week to spend time with her so daddy could go back to work. I am not sure I would have made it thruogh these last two weeks without them. I have been able to rest, nap and just take care of Whitney. It has been a wonderful gift. Fiona is missing her grandma's attention this week and it appears that she is more fun than I am.
As I mentioned Matt is back to work as of Monday the 28th. He was more than ready to return and told me a few times that he did not want my job. I found this quite amusing and thankful that I do not have competition for my position at home.
Since returning home we have had seven doctor appointments. This has been much more than I anticipated. It looks like we will have an average of one per week from here plus physical therapy. The good thing about having so many is that I get out of the house. The doctors have strongly advised us not to take Whitney in public for three months. The reports we have received from these appointments have been positive and a few of them even encouraging. She is healing very well. We have had her evaluated and she does not need any braces or casts right now. This is great news and makes us very grateful. We have a physical therapist coming to our home once a week. I am so thankful that this is one appointment that comes to us. Her tone and flexon in her legs is already improving as I do the therapy daily. This is also quite an encouragment.
We continue to take things day by day as things are still quite overwheming. Thank you all for your continued prayers and encouragement.
January 24, 2008
Shunt Pictures
A few more pictures--this time of the shunt. The first picture is of Whitney's head before they put in the shunt. The second is after the shunt surgery. The shunt is somewhat hard to see in the picture. In person, it is pretty easy to see because it is a small ridge on the side of her head. That said, we are thankful for her head full of hair because it camouflages the shunt pretty well. The doctors have told us that after Whitney develops a thicker layer of skin and more hair, people will generally be unable to see the shunt. They also warned us that some people will make insensitive remarks about the shunt. I think those comments, whether they are about Whitney's shunt or some other aspect of Whitney's spina bifida, are going to be those kind of remarks. We pray that we will have the self-control and inspiration to respond appropriately.
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