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.
March 26, 2009
February 2, 2009
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.
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.
January 16, 2009
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.
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.
January 9, 2009
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.
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.
January 1, 2009
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
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
December 29, 2008
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.
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.
December 9, 2008
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!
November 4, 2008
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.
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.
October 30, 2008
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.
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.
October 27, 2008
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.
Just thought I would share. Have a wonderful week.
October 22, 2008
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.
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.
October 7, 2008
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
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
September 30, 2008
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.
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.
September 18, 2008
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.
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.
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.
September 9, 2008
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.
September 2, 2008
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.
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.
August 25, 2008
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.
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.
August 22, 2008
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.
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.
August 16, 2008
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.
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.
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