Melody no longer needs her hip brace!!!! Her hip is in place. I can't tell you how exciting this is. I was shocked as this was not the news I was expecting. We were just sure that barring a miracle we would be deciding whether to try hip surgery or not.
I cried tears of joy as I drove home. Life with spina bifida means many disappointments and staying positive when you want to weep for your child and the challenges they face. But, some days you get to weep tears, not of sorrow, but of extreme joy. For, on days like today, God grants you a miracle.
I really like the Ortho doctor that we saw this morning. He added a whole day to his week to accomodate all the patients of the doctor who moved.
He spent a few minutes getting up to speed on Melody's hip and then sent us for x-rays of her hip. After returning from x-ray he examined her hip for a few moments and then said he needed to go look at her x-ray again. When he returned to the room he said she didn't need the brace anymore. That her hip is in the socket!
I'm so thankful we got to see him as early as we did. Melody's legs are already kind of stuck in the position the brace held them. The doctor said to keep them there when they no longer need to be would just make that problem worse. So, now we get to begin training her legs to go into a more "normal" position.
We will return to see the Ortho in 4 months. It is possible that Melody's hip will move out of the socket again. The Dr. said not to worry, it would not be something we do, but would be a result of the spina bifida. I was told to keep her brace as she will go back into it if needed. We will be praying that will not be necessary.
The Dr. also gave her the PT release as well as a referral for PT. I'll be following up with that as soon as her nurse case worker returns from vacation on Tuesday.
Melody was also given a RX for AFO's (ankle foot orthodics). She will need to be fitted for those soon as well.
I'm so excited. She can wear ANY type of clothing for a little bit until the AFO's dictate more of her wardrobe. We are already planning to buy her a pair of jeans and a float for the pool. Can't wait to put her in her supersaucer and change her car seat back. Diaper changes have become much easier and she is so much lighter. My back, neck and shoulders are grateful already. But the best part is cuddling her without the brace in the way.
What a wonderful day!
Friday, June 25, 2010
Thursday, June 24, 2010
Counting Our Blessings, Again
Tomorrow I will take Melody to our much awaited visit with the Pediatric Orthopedic Doctor.
Tonight I was doing a bit of research on the internet to have my questions for tomorrow's visit. As always, doing research on spina bifida can be depressing.
Tonight I will count my blessings instead of my worries. Here I go:
1- We have the privilege of having Melody Annalise in our family. The alternative of not having her at all is too painful to contemplate. We are so thankful to have her, just the way she is.
2- Melody continues to be our miracle.
3- Melody has had NO urinary track infections, NO shunt malfunctions, NO emergency room visits, and NO constipation. These are all pretty amazing for our first year with SB.
4 - Our house sold quickly at a wonderful price and we have an amazing real estate agent :) who is helping us look for our new single story home.
5 - We have some amazing friends who are letting us enjoy their home, and more importantly their pool, while we look for our new house.
6- David, Elizabeth, Hannah and Joel, our other amazing kids who bring us joy each day and love on their baby sister like crazy. Watching them love on Melody is such a wonderful delight.
7- An abundance of friends and family who bless, encourage and love us.
8- Most of all God's love. What a wonderful priviledge to carry "everything to God in prayer." There is no greater place to lay my worries and fears about SB than at the feet of Jesus.
Tonight I was doing a bit of research on the internet to have my questions for tomorrow's visit. As always, doing research on spina bifida can be depressing.
Tonight I will count my blessings instead of my worries. Here I go:
1- We have the privilege of having Melody Annalise in our family. The alternative of not having her at all is too painful to contemplate. We are so thankful to have her, just the way she is.
2- Melody continues to be our miracle.
3- Melody has had NO urinary track infections, NO shunt malfunctions, NO emergency room visits, and NO constipation. These are all pretty amazing for our first year with SB.
4 - Our house sold quickly at a wonderful price and we have an amazing real estate agent :) who is helping us look for our new single story home.
5 - We have some amazing friends who are letting us enjoy their home, and more importantly their pool, while we look for our new house.
6- David, Elizabeth, Hannah and Joel, our other amazing kids who bring us joy each day and love on their baby sister like crazy. Watching them love on Melody is such a wonderful delight.
7- An abundance of friends and family who bless, encourage and love us.
8- Most of all God's love. What a wonderful priviledge to carry "everything to God in prayer." There is no greater place to lay my worries and fears about SB than at the feet of Jesus.
Monday, June 21, 2010
We're IN!
Melody has an appointment with the Pediatric Orthopedic Doctor this Friday at 9:30am!!!!!
Not exactly sure how I managed to get one, but I called again this morning and the receptionist was able to get us in. Maybe Melody's file was flagged "Mom is calling daily?" :) However it happened, I am just very thankful. Thank you God. We'll let you know how it goes.
Not exactly sure how I managed to get one, but I called again this morning and the receptionist was able to get us in. Maybe Melody's file was flagged "Mom is calling daily?" :) However it happened, I am just very thankful. Thank you God. We'll let you know how it goes.
Thursday, June 17, 2010
Doctor News: The Good and the Bad
THE GOOD NEWS:
Hannah had a follow up with the ENT today and the good news is the infection in her neck is gone and the pocket of fluid is going away. We will return to the ENT again in 3 weeks, but if things continue this way, she should be fine. Pray that she will not get another infection in throat. We'd really like for her to be off of antibiotics for a good long time.
MORE GOOD NEWS:
Melody had her 9 month Spina Bifida Clinic yesterday. Her kidneys and bladder continue to look healthy and she continues to have no issues with her shunt. We got refills on the prescriptions she needs and plans to increase dosages at 1 year as she won't return to clinic until December.
THE NOT SO GOOD NEWS:
Yesterday we scheduled a babysitter so Kevin could come thinking this would be a monumental one. We had a whole list of questions for the orthopedic doctor as Melody has been in the Pavlik and now Rhino brace since Jan and we have yet to see the doctor personally. Last time we were there, he was not, but had given his notes to Melody's pediatrician. This gave us the information he wanted us to have, but did not allow for any questions to be answered. We soon found out he was not there, again, and more than that, he has taken another job and moved to another state!
We asked a bunch of questions of her spina bifida pediatrician and the rehabilitation specialist. They both said, you need to ask the doctor, we can't answer those questions. So, we left with the plan to schedule an appointment with the interim orthopedist. This was very disappointing as they can't run her physical therapy consult until he releases her for that. Also, they mentioned it looks like Melody will need AFO's (ankle and foot orthodics), but that is a decision the orthopedist will make.
Today Melody's awesome nurse/case worker called as she is trying to get Melody scheduled with the orthopedist. The first appointment is in OCTOBER!! They won't even schedule her appointment then as CCS (her insurance through the state) expires in Sept. We can't even get her on a waiting list to be called if there is a cancellation until they can actually schedule her an appointment in Oct., which they can't do until her CCS is extended. Needless to say, her caseworker is very frustrated.
She has submitted paperwork to get Melody's CCs extended, but that will take a few weeks. Then we can get her an appointment in Oct. and get on the waiting list for cancellations and hopefully get in earlier. I now have the doctors phone number and will call weekly to see if there is a cancellation and if they will try and fit her in. They're going to love me. :)
A new orthopedist for the spina bifida clinic arrives in September, so it is possible we will be able to see him before we could actully see the interim doctor. Melody's nurse/case worker is pursuing both options to try and get the earliest available.
From our perspective the brace is not resolving Melody's hip issues. Barring a miracle, she will probably need hip surgery, or she will live the rest of her life with her hip out of the socket. Of course, this has not been confirmed as we have not seen the doctor, but the little the ultrasound techs can tell us and from the reports, there has been no change in her hip. If Melody did not have spina bifida, she would likely be scheduled for hip surgery already. However, with spina bifida it is controversial as to whether the surgery will even help and we were told they take a more "patient" approach. If they don't think she'll walk anyway, they do nothing. God help the doctor that suggests that approach to me.
Hannah had a follow up with the ENT today and the good news is the infection in her neck is gone and the pocket of fluid is going away. We will return to the ENT again in 3 weeks, but if things continue this way, she should be fine. Pray that she will not get another infection in throat. We'd really like for her to be off of antibiotics for a good long time.
MORE GOOD NEWS:
Melody had her 9 month Spina Bifida Clinic yesterday. Her kidneys and bladder continue to look healthy and she continues to have no issues with her shunt. We got refills on the prescriptions she needs and plans to increase dosages at 1 year as she won't return to clinic until December.
THE NOT SO GOOD NEWS:
Yesterday we scheduled a babysitter so Kevin could come thinking this would be a monumental one. We had a whole list of questions for the orthopedic doctor as Melody has been in the Pavlik and now Rhino brace since Jan and we have yet to see the doctor personally. Last time we were there, he was not, but had given his notes to Melody's pediatrician. This gave us the information he wanted us to have, but did not allow for any questions to be answered. We soon found out he was not there, again, and more than that, he has taken another job and moved to another state!
We asked a bunch of questions of her spina bifida pediatrician and the rehabilitation specialist. They both said, you need to ask the doctor, we can't answer those questions. So, we left with the plan to schedule an appointment with the interim orthopedist. This was very disappointing as they can't run her physical therapy consult until he releases her for that. Also, they mentioned it looks like Melody will need AFO's (ankle and foot orthodics), but that is a decision the orthopedist will make.
Today Melody's awesome nurse/case worker called as she is trying to get Melody scheduled with the orthopedist. The first appointment is in OCTOBER!! They won't even schedule her appointment then as CCS (her insurance through the state) expires in Sept. We can't even get her on a waiting list to be called if there is a cancellation until they can actually schedule her an appointment in Oct., which they can't do until her CCS is extended. Needless to say, her caseworker is very frustrated.
She has submitted paperwork to get Melody's CCs extended, but that will take a few weeks. Then we can get her an appointment in Oct. and get on the waiting list for cancellations and hopefully get in earlier. I now have the doctors phone number and will call weekly to see if there is a cancellation and if they will try and fit her in. They're going to love me. :)
A new orthopedist for the spina bifida clinic arrives in September, so it is possible we will be able to see him before we could actully see the interim doctor. Melody's nurse/case worker is pursuing both options to try and get the earliest available.
From our perspective the brace is not resolving Melody's hip issues. Barring a miracle, she will probably need hip surgery, or she will live the rest of her life with her hip out of the socket. Of course, this has not been confirmed as we have not seen the doctor, but the little the ultrasound techs can tell us and from the reports, there has been no change in her hip. If Melody did not have spina bifida, she would likely be scheduled for hip surgery already. However, with spina bifida it is controversial as to whether the surgery will even help and we were told they take a more "patient" approach. If they don't think she'll walk anyway, they do nothing. God help the doctor that suggests that approach to me.
Tuesday, June 15, 2010
Doctor Visits
Tomorrow and Thursday we will be visiting the doctors. Wednesday Melody has Spina Bifida clinic. We will see the usual doctors (pediatrician, neurologist, urologist) as well as the Pediatric Orthopedic. As Melody is now 9 months old, they'll be doing a full assessment of her leg function and make physical therapy plans. We should also learn more about her hip and have lots of questions we hope to have answered as well.
Pray for this visit. I am anxious about it. I think I know Melody pretty well and her abilities as well as areas to work on. However, often the doctors reveal something new and it is sometimes hard to take. Kevin will be going with us to help process all we learn as well as ask questions.
Thursday is Hannah's follow up with the ENT. The redness is gone from her neck, so I know the infection is better. However, there is still a sizeable pocket of fluid where the cyst was. He had only discussed draining it if it grew, which it has not. She has 3 more days of antibiotics. So, we'll see what the doctor says then.
I'll try to post updates, but it may be a few days as life is busy until Friday.
Pray for this visit. I am anxious about it. I think I know Melody pretty well and her abilities as well as areas to work on. However, often the doctors reveal something new and it is sometimes hard to take. Kevin will be going with us to help process all we learn as well as ask questions.
Thursday is Hannah's follow up with the ENT. The redness is gone from her neck, so I know the infection is better. However, there is still a sizeable pocket of fluid where the cyst was. He had only discussed draining it if it grew, which it has not. She has 3 more days of antibiotics. So, we'll see what the doctor says then.
I'll try to post updates, but it may be a few days as life is busy until Friday.
Saturday, June 12, 2010
Melody's First Swim
I finally got brave and took Melody in the pool with us the other day. Well, actually I warmed up the jacuzzi a bit so Melody and I wouldn't get too cold. I just left her brace on as that was what the orthodics man had said and it really did need a good washing. She loves the water. Here are some pictures and video of the first of sure to be many swims for Melody.
Wednesday, June 9, 2010
Cyst Saga Continues
Yesterday Hannah saw her doctor for a post-op appointment. He confirmed what I knew that her neck is infected. We have begun a round of antibiotics once again and will return on the 17th to see how it looks then. Continual antibiotic use is what we were trying to avoid!
Pretty much right after Hannah surgery I noticed a bump on one side of her neck. I assumed it was part of the neck swelling and would go down. But, the rest of her swelling went down and that bump stayed. Then, over the last few days it began to get larger and a couple of days ago began to turn a dark bruise looking color. She has had no fever or pain, though.
From Monday night to Tuesday night the size almost doubled. The doctor is still hopeful that the cyst has not returned. He thinks that since I noticed something almost from the beginning that it could be a hematoma or pocket of fluid that is not a cyst. Hannah has had a cold this past week, so that is probably where the infection came from. It is possible that if a cell was left during surgery the cyst could grow back.
We are praying antibiotics will resolve the issue. That would be awesome. Other options are draining the fluid if it gets bigger or repeat surgery. We are hoping to avoid both of these.
Pretty much right after Hannah surgery I noticed a bump on one side of her neck. I assumed it was part of the neck swelling and would go down. But, the rest of her swelling went down and that bump stayed. Then, over the last few days it began to get larger and a couple of days ago began to turn a dark bruise looking color. She has had no fever or pain, though.
From Monday night to Tuesday night the size almost doubled. The doctor is still hopeful that the cyst has not returned. He thinks that since I noticed something almost from the beginning that it could be a hematoma or pocket of fluid that is not a cyst. Hannah has had a cold this past week, so that is probably where the infection came from. It is possible that if a cell was left during surgery the cyst could grow back.
We are praying antibiotics will resolve the issue. That would be awesome. Other options are draining the fluid if it gets bigger or repeat surgery. We are hoping to avoid both of these.
Sunday, June 6, 2010
Hip Abduction Helpful Hints
Several months ago Melody's doctor prescribed the "pavlik harness" for Melody's unstable hip and we've since moved up to the "rhino cruiser." Having a child in a hip abduction brace is a challenging adventure. One of my biggest frustrations has been the lack of help given when we left the doctor. I have had to come home and figure things out. The internet has been the greatest source of help when a few Moms have shared their tips.
So, to add to the motherly advice in cyberspace, here is a list of tips I've complied:
1) The week your child is in a new brace will be difficult. There are the emotional adjustments as well as the practical ones, like figuring out a whole new wardrobe. Give yourself time to adjust.
2) Once you've adjusted, what seemed overwhelming will soon become routine.
3) No matter how routine dealing with the brace becomes, there will be difficult and emotional moments. It just isn't easy or "normal." Ever.
4) Baby Gear is another difficulty. Finding things that accomodate your child's legs sticking straight out is difficult. Here are some of the things we've found that work:
- Macleran Techno XLR - I love this stroller and it accomodates Melody's brace perfectly. I really can't say enough good things about this one.
- High Chair - Chicco - the only one we could find without sides. The arms go up and down, so I put her in and then lower the arms over her legs. It works very well.
- Car seats have been our nemisis. We are using the Eddie Bauer Deluxe 3-in-1. It accomodates Melody's legs and is rear facing as well as converts to forward facing and then a booster. Those are really the only good points I have found so far. It was less expensive than other options and was available immediately when we needed it, so that is what we have been using.
5) Leg warmers - they are easily obtained on ebay for $2-4/pair. The are wonderful with the Pavlik harness and I could change diapers without having to remove the harness.
6) The rhino cruiser makes Melody very hot so we've been dealing with heat rash and eczema. I've found a light pair of leg warmers and a onesie are about all she can comforably wear. I leave off her socks and shoes as it allows her to stay cooler.
I'm sure this is not the last post, but those are my tips for now.
So, to add to the motherly advice in cyberspace, here is a list of tips I've complied:
1) The week your child is in a new brace will be difficult. There are the emotional adjustments as well as the practical ones, like figuring out a whole new wardrobe. Give yourself time to adjust.
2) Once you've adjusted, what seemed overwhelming will soon become routine.
3) No matter how routine dealing with the brace becomes, there will be difficult and emotional moments. It just isn't easy or "normal." Ever.
4) Baby Gear is another difficulty. Finding things that accomodate your child's legs sticking straight out is difficult. Here are some of the things we've found that work:
- Macleran Techno XLR - I love this stroller and it accomodates Melody's brace perfectly. I really can't say enough good things about this one.
- High Chair - Chicco - the only one we could find without sides. The arms go up and down, so I put her in and then lower the arms over her legs. It works very well.
- Car seats have been our nemisis. We are using the Eddie Bauer Deluxe 3-in-1. It accomodates Melody's legs and is rear facing as well as converts to forward facing and then a booster. Those are really the only good points I have found so far. It was less expensive than other options and was available immediately when we needed it, so that is what we have been using.
5) Leg warmers - they are easily obtained on ebay for $2-4/pair. The are wonderful with the Pavlik harness and I could change diapers without having to remove the harness.
6) The rhino cruiser makes Melody very hot so we've been dealing with heat rash and eczema. I've found a light pair of leg warmers and a onesie are about all she can comforably wear. I leave off her socks and shoes as it allows her to stay cooler.
I'm sure this is not the last post, but those are my tips for now.
12 Years Old
I'm a bit behind on this post. But, we are now the parents of a 12-year-old. Today David was promoted from 6th grade into Junior High and Youth Group. What a way to make a Mom teary-eyed and proud. When your kids are born it is hard to imagine the day they'll start Junior High, but then, before you know it that day is here and you know you've spent a lot of time preparing for them for that.
Last week was David's twelveth birthday. We celebrated the day with our traditional chocolate chip pancakes for breakfast and David chose Applebee's for dinner. The next day we had some friends over to go swimming, so it was a fun celebratory weekend. This week David and I will take our trip to Disneyland and the Downtown Disney Lego store. That will round out his birthday celebrations and take care of the haul of money he made from his relatives. We are both looking forward to it.
We are so proud of David. He has such a sensitive heart and love for the Lord. His understanding of the world is getting so mature and I love to have conversations about important things with him. He is so helpful around the house and with his siblings. He can make Melody giggle like no one else can. He plays Lego with Joel by the hour and generally has an abundance of patience with a four-year-olds "rules." He has taken up tennis this year and really enjoys it and is doing well. He runs with Kevin several times a week and with a little lead time, is now beating Kevin home. Elizabeth joins them sometimes and it is a joy to see brother and sister running together. Hannah always enlists David to come play games on her Webkins so she can earn lots of Kins Cash. He is the best at gaming around here.
We are so thankful for the 12 years we've been privileged to call David our son. What a wonderful gift.
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