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.