My Mom and Dad arrived last Wednesday. This afternoon, my brother Tim arrived. We are having lots of fun with the family here. The kids opened a gift tonight, the puzzle table is out, several games of Star Wars Risk have been played, presents are mostly wrapped, meals are mostly planned, kids have sung at the Retirement Home, more holiday treats have been consumed than I care to know about, and a gingerbread castle has been constructed. Of course, we've been doing lots of talking as well. So, my blog may be silent for the next few days as we celebrate the birth of our Saviour with our family.
Merry Christmas to you all. May the peace of Christ invade your hearts in new way this Christmas.
Wednesday, December 23, 2009
Thursday, December 17, 2009
Look Mom, I Can Move My Toe
Yesterday, I saw Melody move a toe! One toe, for the first time ever. One little toe that brought tears to my eyes and still makes me weepy. Who knew a toe wiggle could be so beautiful?
Yesterday was Melody's second spina bifida clinic and my head is still spinning. We saw four doctors, her case manager, and a social worker. There is so much information discussed, it can be quite overwhelming. Thankfully, our wonderful case manager sums it all up and schedules all the follow up appointments and generally makes sense of everything and writes it on one summary sheet.
Overall, the doctors are very impressed with Melody's health. Her shunt is functioning well and her incisions are all healed nicely. Melody cooed and smiled and charmed her doctors and nurses and generally let them know what a social little girl she is.
This was our first consult with the pediatric orthopedics. I had concerns about Melody's hip, which were confirmed by the doctor. Only, it wasn't the same one I thought had problems. Her right hip moves in and out of the socket easily. So, she will soon be fitted for a "pavlick harness" which she will wear 23 hours/day for several months. It is our hope and prayer that this will solve the problem. If not, the next options are mostly surgical and may not be feasible as the underlying reason for the dislocation is Melody's spina bifida. The thought of the harness is a bit overwhelming, but I think that is the way any new medical intervention is. Once we get used to it, we'll be just fine.
Melody moves her hips and knees, so the doctor was pleased with that. He showed me how to stretch her feet. Her feet curl up and look like beans on the bottom. The doctor wants me to stretch them daily so they look less "beanie." They need to be flatter for her to walk someday. Also, her feet need to be stretched up as they point down naturally. She'll need to have more flexibility in her ankles to walk, so I'll be stretching those daily as well.
I was able to consult with two Urologists. I had already consulted with one and wasn't really pleased with our conversation. Not too long later one of the more experienced urologists "accidentally" entered our room. It was a "God Shot" for me. He was extremely helpful and had a completely different perspective and experience level. He was able to get Melody scheduled for the CMG test in early March, which is earlier than we would have been able to do it. This test will test the nerves and function of her bladder. Based on the results of that, catheterization may not be necessary any more. Here's hoping!
We will return to spina bifida clinic in late March. By then Melody will hopefully already had the CMG test and be wearing the pavlick harness and also had a hip ultrasound to see how the harness is working.
For now, we'll be stretching beanie feet and watching for toe wiggles.
Tuesday, December 15, 2009
Spina Bifida Clinic #2
Tomorrow morning I will be headed to the doctor early with Melody. In the morning she will have a kidney ultrasound. Then in the afternoon she has her second spina bifida clinic. This will be the first time she is seen by the physical therapists, so I am anxious to hear what they have to say. It will be a busy day and we plan to pick up my parents at the airport before returning home. We can't wait to have Grandma and Grandpa here for two weeks.
Monday, December 14, 2009
Not a Lot to Say
Melody - 3 months old - wearing Mommy's baby outfit.
I know this surprises you, but I don't have a lot to say today. Kevin took the older 4 to a field trip at the USS Midway Museum today and I got a whole day at home with Melody. Talk about peace and tranquility and a few minutes to do what I wanted to do. It was wonderful. I got a lot of things in my "to do" pile accomplished, which lifts quite a load, too.
Here are a few pictures of the USS Midway Museum:
*kids are wearing headsets for the audio tour
Wednesday, December 9, 2009
3 Months Old
It is hard to believe, but it is true. Melody is 3 months old. She continues to do very well and I think she is beginning to cut teeth judging from the amount of drool and fussiness she is exhibiting lately. We are all doing well during this busy time of year. I am trying to let a lot of things go this holiday season and enjoy the advent without too much stress. That is a tall order, but I'm working on it. Tomorrow we are off to a Holidance performance with our school. I have Legoland photos to post as well as Christmas fun, but I'll save those for another night. The train is running around the tree and the kids, especially Joel, are spending much time watching it. We were even able to get a few lights up outside yesterday. We have our gift lists well underway (thanks to the internet) and even did our first round of wrapping tonight.
Saturday, December 5, 2009
Dec. 27th - Save the Date
Sunday, December 27, 2009 at 10:00 am we will be having Melody's dedication as part of the Sunday morning service at Missio Dei Community Church. If you are in the area and are available that morning, we would love to have you come celebrate with us. Melody has touched so many lives beyond just ours and we so appreciate your input, prayers and love in her life and ours.
Melody's dedication is about celebrating the wonderful daughter God has chosen to bless us with and committing to raise her to know and love Jesus. When I'm asked what I want my children to be like when they grow up, I have to say, "that they would love the Lord their God with all their heart, mind, soul and strength." That is our desire and prayer for Melody.
I'd love to know if you can be a part of this time of committment and celebration.
Melody's dedication is about celebrating the wonderful daughter God has chosen to bless us with and committing to raise her to know and love Jesus. When I'm asked what I want my children to be like when they grow up, I have to say, "that they would love the Lord their God with all their heart, mind, soul and strength." That is our desire and prayer for Melody.
I'd love to know if you can be a part of this time of committment and celebration.
Wednesday, December 2, 2009
Normalcy
Normalcy. I asked Kevin how to spell it, and he replied, "we don't use that word." Most of the time our lives feel anything but normal. I've been thinking about normalcy a lot lately and how much we yearn for it. A normal life. That is what we really want for our children most of the time, especially Melody. That she would be able to live as normal of a life as possible.
The other day I mentioned catheterization to a friend and they replied, "you have to do that?" I realized that my life, our lives, Melody's life looks very normal to those around us. I've had others comment, I know a family with a spina bifida child and it is "no big deal." I'll just bet it was a pretty big deal to them. I've realized that is the role of the parents, and often especially the Mother to make our lives look like it is "no big deal" and create a "normal" life for our child, despite the abnormal circumstances we may face daily.
Now more than even I am aware of the challenges special needs parents face. I have great admiration for friends who made me believe their lives were normal and have created a normal life for their children. I spoke with a mother the other day whose own mother does not believe her grandchild has a specific diagnosed condition. While that is sad, it underscores the reality that this Mom has made their lives appear so normal, that even those fairly close to the situation can't see it. It is a double-edged sword in some ways. We make our lives appear so normal to those around us that it can be a very lonely place as no one understands the real struggles.
So, on the theme of Normalcy, here are some normal Santa pictures. Joel insisted on telling Santa an "important question." He wants the Diego Train for Christmas. Santa asked if he wanted anything else, but no, that is all. Hannah charmed Santa, and Elizabeth sat on his lap for the candy cane. Melody did not scream at all and David declared himself too big for the Big Guy's lap. These are really our first Santa pictures as most years the kids have been too terrified to go near him.
Thursday, November 26, 2009
Happy Thanksgiving!
Wednesday, November 25, 2009
Check Up
Today was Melody's 2 month check up with her pediatrician. She weighed in at 9 pounds, 4 ounces! That means she has gained 3 pounds. As that is over 1 ounce each day, that is very good. She was in the 10th percentile in weight and in the 25% in height. I think she is 22 1/2 inches. She received her first immunizations today as well.
The only area of concern is her left hip. I pointed it out to the doctor as Melody can lay that leg flat out to the side. The doctor agreed that it does not have the tone of the one on the right. Dr. Zaft wants to have an ultrasound of that hip just to check it out. Dec 16th is Melody's next spina bifida clinic. She already has a kidney ultrasound that morning. I will try and schedule her hip ultrasound that same morning. That way we'll have both tests when we see her doctors at spina bifida clinic that afternoon. Then we get to pick up Grandma & Grandpa Coats at the airport!
Once again I am grateful for how well Melody is doing. There will always be areas of concern, but I count my blessings that so far they seem to be fairly minor.
David was in for his annual checkup and immunizations as well, so I was able to get two kids taken care of in one morning. David is now only 4 inches shorter than me! He'll be taller than me before I know it.
The only area of concern is her left hip. I pointed it out to the doctor as Melody can lay that leg flat out to the side. The doctor agreed that it does not have the tone of the one on the right. Dr. Zaft wants to have an ultrasound of that hip just to check it out. Dec 16th is Melody's next spina bifida clinic. She already has a kidney ultrasound that morning. I will try and schedule her hip ultrasound that same morning. That way we'll have both tests when we see her doctors at spina bifida clinic that afternoon. Then we get to pick up Grandma & Grandpa Coats at the airport!
Once again I am grateful for how well Melody is doing. There will always be areas of concern, but I count my blessings that so far they seem to be fairly minor.
David was in for his annual checkup and immunizations as well, so I was able to get two kids taken care of in one morning. David is now only 4 inches shorter than me! He'll be taller than me before I know it.
Tuesday, November 24, 2009
Singing to My Melody
There is a song by Sidewalk Prophets I find myself singing often to Melody. It is "These are the Words I Would Say." The chorus so beautifully sums up my thoughts and prayers for Melody.
"Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,"
Be strong in the Lord, my sweet Melody. Never give up. I know you're going to do great things. It has been evident to your Daddy and me that God has His hand on you from before your birth. Don't forget why you're here. God has a plan for you my precious daughter. Never forget that.
"Be strong in the Lord and,
Never give up hope,
You're going to do great things,
I already know,
God's got His hand on you so,
Don't live life in fear,
Forgive and forget,
But don't forget why you're here,
Take your time and pray,
These are the words I would say,"
Be strong in the Lord, my sweet Melody. Never give up. I know you're going to do great things. It has been evident to your Daddy and me that God has His hand on you from before your birth. Don't forget why you're here. God has a plan for you my precious daughter. Never forget that.
Wednesday, November 18, 2009
CA Science Center and FLL Competition
Last Saturday we had a fun day at the CA Science Center in Santa Ana. The class that David has been taking this year at the Riverside Student Center is also a team for the First LEGO League competition. They have been preparing for this all fall and had their qualifier on Saturday. It was a fun, exhausting and rewarding day.
Riverside Student Center Lego Squad
The LEGO League competition has two parts. First, they had to research a transportation problem in our city. They had to come up with a solution and present it in a skit form. They also had to answer questions about their research and solution as well as talk to the judges about what they would be doing in part two.
Part two involved making LEGO robots. These robots are then programmed to complete a series of tasks. Each team is given a few minutes to successfully complete as many tasks as they can in the given amount of time. The tasks are carried out on a board with a LEGO obstacle course on it.
At the end of the day our team had qualified to compete at LEGOLAND on December 5th. We are very excited, but they have a lot more work to do between now and then, too. We were disappointed we had left early and missed the announcement. The younger kids were getting pretty tired and my Aunt and Uncle had already been waiting at our house for about an hour for us to arrive.
The entire family enjoyed the Science Center and Grandma Allen joined us there. We enjoy the fun times with Grandma, and we love having the extra pair of hands.
Riverside Student Center Lego Squad
The LEGO League competition has two parts. First, they had to research a transportation problem in our city. They had to come up with a solution and present it in a skit form. They also had to answer questions about their research and solution as well as talk to the judges about what they would be doing in part two.
Part two involved making LEGO robots. These robots are then programmed to complete a series of tasks. Each team is given a few minutes to successfully complete as many tasks as they can in the given amount of time. The tasks are carried out on a board with a LEGO obstacle course on it.
At the end of the day our team had qualified to compete at LEGOLAND on December 5th. We are very excited, but they have a lot more work to do between now and then, too. We were disappointed we had left early and missed the announcement. The younger kids were getting pretty tired and my Aunt and Uncle had already been waiting at our house for about an hour for us to arrive.
The entire family enjoyed the Science Center and Grandma Allen joined us there. We enjoy the fun times with Grandma, and we love having the extra pair of hands.
Elizabeth takes Melody on her first slide.
The thing we enjoyed the most was a scavenger hunt. The wand you see Elizabeth holding makes things light up and talk to you when you are on the scavenger hunt. There were 6 different quests in the dinosaur area and we only completed 3, much to David and Hannah's dismay. They were into it the most. You would search for your items, wave the wand at them and collect them. Then go to your computer and wave the wand again to see if you had completed your mission or get more instructions. It was very fun and creative.
We returned home and enjoyed a visit from Aunt Liz and Uncle Bob Long. They were able to stay overnight and go to church with us the next day, so that was very special.
We were busy Sunday as well, so I have been pretty tired this week. I'm really looking forward to a week off from school next week. The family is already looking forward to a full day at LEGOLAND, and I'd better start storing up energy now.
Tuesday, November 10, 2009
Counting Our Blessings
Recently I was filling out an update on nutritional supplements. Since Melody's diagnosis I have been taking nutritional supplements which hopefully will help Melody's health overall. Though I know God is the great physician and healer, using what He has given to help our bodies is wise.
As I was reflecting on Melody's overall health so far, I realized how much we have to be grateful for.
* Melody has not had to return to the hospital at all since her birth.
* She has not had a single urinary tract infection despite four catheterizations each day. We have been told to use "clean" procedures, not "sterile" procedures, so the chance of infection is always there.
* She has had very few and relatively minor diaper rashes, which is pretty amazing considering she is almost always wet or messy due to her lack of muscle control and urogenic bladder.
* Melody has had no issues with her shunt.
* She sleeps well at night. I feed her at 6 0r 7 pm. She goes down at 8pm with very little fussing. I wake her to feed her between 10 - 11 and she goes right back to sleep until 6 or 7 am.
*Melody moves her hips and knees.
*Other than her spina bifida related issues, Melody has no other medical concerns.
I have to admit there are times when I feel overwhelmed. The catheterizations and my overly cautious diapering routines can alone be overwhelming. I admit sometimes just watching the lack of movement in Melody's feet make my heart ache and bring tears to my eyes. However, those are the times I try to remember all the blessings. That though there are challenges, there are so many easons to give praise.
Praise be to God from Whom all blessings flow!
As I was reflecting on Melody's overall health so far, I realized how much we have to be grateful for.
* Melody has not had to return to the hospital at all since her birth.
* She has not had a single urinary tract infection despite four catheterizations each day. We have been told to use "clean" procedures, not "sterile" procedures, so the chance of infection is always there.
* She has had very few and relatively minor diaper rashes, which is pretty amazing considering she is almost always wet or messy due to her lack of muscle control and urogenic bladder.
* Melody has had no issues with her shunt.
* She sleeps well at night. I feed her at 6 0r 7 pm. She goes down at 8pm with very little fussing. I wake her to feed her between 10 - 11 and she goes right back to sleep until 6 or 7 am.
*Melody moves her hips and knees.
*Other than her spina bifida related issues, Melody has no other medical concerns.
I have to admit there are times when I feel overwhelmed. The catheterizations and my overly cautious diapering routines can alone be overwhelming. I admit sometimes just watching the lack of movement in Melody's feet make my heart ache and bring tears to my eyes. However, those are the times I try to remember all the blessings. That though there are challenges, there are so many easons to give praise.
Praise be to God from Whom all blessings flow!
Sunday, November 8, 2009
The Jica Boomba Nacho and Other Allen Excitement
This is Joel performing the Jica Boomba Nacho. One of the many fun and entertaining things I get to watch while feeding Melody.
The kids have discovered the video feature on my camera, so I now have a lot of videos to sort through before I can post them. It has been a few days without pictures and I know Grandma & Grandpa are waiting for some. Maybe a few others are as well? It is always an adventure taking pictures of the kids together. But, here are a few.
Friday's excitement involved David and a scooter accident on our driveway. The scooter slipped out from under him when he turned too tightly. His helmet hit the driveway pretty hard, so I am very thankful he was wearing it. He also hit his front tooth on the driveway, but managed to not do much damage to his lip. The corner of his tooth broke off. So, Kevin came home and took him to an emergency dentist appointment where they glued the broken piece back on. We will take him for a follow up appointment this week and hope that the gluing is the only treatment needed. I am thankful it was not much worse. In all the excitement, I failed to get a picture of the half tooth. Wouldn't that have been fun?
Tuesday, November 3, 2009
Not My Mommy!
My Mommy did not forget to change my my diaper until I leaked on her as a reminder, not MY Mommy.
My Mommy did not run out of pj's for me as my laundry did not get done, not MY Mommy.
My Mommy did not yell at my brother and then tell everyone to "stop yelling," not MY Mommy.
My Mommy did not exercise this morning, only to offset it with lots of chocolate chip cookies, not MY Mommy.
My Mommy did not skip science and reading Robinson Crusoe to my siblings as she was too tired, not MY Mommy.
My Mommy did not let my brothers and sisters watch television instead, not MY Mommy.
My Mommy did not consider turning the clocks ahead so everyone would go to bed earlier, not MY Mommy.
Someone else must have been at our house today, cause it was not MY Mommy.
My Mommy did not run out of pj's for me as my laundry did not get done, not MY Mommy.
My Mommy did not yell at my brother and then tell everyone to "stop yelling," not MY Mommy.
My Mommy did not exercise this morning, only to offset it with lots of chocolate chip cookies, not MY Mommy.
My Mommy did not skip science and reading Robinson Crusoe to my siblings as she was too tired, not MY Mommy.
My Mommy did not let my brothers and sisters watch television instead, not MY Mommy.
My Mommy did not consider turning the clocks ahead so everyone would go to bed earlier, not MY Mommy.
Someone else must have been at our house today, cause it was not MY Mommy.
Monday, November 2, 2009
SMILES
Friday, October 30, 2009
Physical Therapy, Not!
At least, not yet anyway. I finally talked with the Nurse/Case Worker at the Spina Bifida Clinic. We've been playing phone tag all week. I was able to ask her all my physical therapy questions. What I have learned is Melody does not need to start physical therapy this early! Yeah! She will be evalualted in mid-December by the physical therapists at her next spina bifida clinic. At that time if they determine she needs early therapy, they will refer her. However, it is highly likely Melody will not need physical therapy until at least 9 months of age when they really start working on walking, etc. From our conversation and reasons why a child might need earlier physical therapy, I'm guessing Melody will not need it. This is a wonderful blessing. That despite her leg weakness, she really is doing very well for this young. I am to continue to do the stretching exercises I was shown at the hospital. It appears that stretching and keeping her limbs limber is the most important thing at this point. I must say I am relieved we don't have to add that to our schedule right now.
Wednesday, October 28, 2009
Encouragement?
Should I be encouraged if the Early Intervention Infant Specialist spent 20 minutes or so with Melody and said something about her not having any "issues." She had not yet read Melody's file, so did not know about her spina bifida. Apparently she did not notice her leg weakness. I'll take that as a good sign.
We've had two visits now from the infant teachers sent by Early Intervention. The one that came a few days ago got scared driving on the hill to our home, and so she gave Melody's case to another teacher. That was why our new teacher today didn't have Melody's file yet, as she was just given the case yesterday. The teacher today seemed much more knowledgeable overall, so I think I'll be happy they made the switch.
Melody lasted about 20 minutes of activities before falling asleep. As usual, she screamed when laid on her back. She likes to be held sitting up, or lay on her tummy, but doesn't appreciate her back. She has very good head control for her age, follows toys a bit, and really watches whomever is talking with her. This morning she smiled at me a few time when I was talking to her. She has done this before, but never repeated it. You can just see her eyes smiling sometimes, but getting the mouth muscles to smile with her eyes doesn't happen all the time.
I have made several phone calls regarding physical therapy, and have learned no one has yet sent a referral for it. I'm finding out more of the process each phone call I make, but it is a process to actually get there. I'm hopeful we'll have it all figured out, soon.
We've had two visits now from the infant teachers sent by Early Intervention. The one that came a few days ago got scared driving on the hill to our home, and so she gave Melody's case to another teacher. That was why our new teacher today didn't have Melody's file yet, as she was just given the case yesterday. The teacher today seemed much more knowledgeable overall, so I think I'll be happy they made the switch.
Melody lasted about 20 minutes of activities before falling asleep. As usual, she screamed when laid on her back. She likes to be held sitting up, or lay on her tummy, but doesn't appreciate her back. She has very good head control for her age, follows toys a bit, and really watches whomever is talking with her. This morning she smiled at me a few time when I was talking to her. She has done this before, but never repeated it. You can just see her eyes smiling sometimes, but getting the mouth muscles to smile with her eyes doesn't happen all the time.
I have made several phone calls regarding physical therapy, and have learned no one has yet sent a referral for it. I'm finding out more of the process each phone call I make, but it is a process to actually get there. I'm hopeful we'll have it all figured out, soon.
Monday, October 26, 2009
Support System
Before we brought Melody home from the hospital we were asked various times what kind of support system we had at home. I found it kind of comical that although we already had 4 other children, NOW they're worried if we have someone to support us. We had social workers, doctors and nurses all making sure we had help when we got home. It makes sense, that they'd make sure we were okay before sending us home with a special needs child, but I did find it interesting as well.
Due to their questioning I found myself reflecting a lot on our support system. We have a wonderful one and it has been such a blessing to us over the past few months. We have FAMILY who have all been incredibly supportive, and we do have a lot of family. Sometimes it is from afar with words and prayers, sometimes more hands on, but always supportive. My parents spending a month here, Kevin's Mom coming to help with the kids, Aunt Wendy doing research for us and calling wheelchair basketball "wicked cool," and my brother offering to come and help if we needed it, despite having plenty to take care of at home.
FRIENDS whom are more plentiful than we realized. MOMS Club who brought meals for a week and offered more help than I could even use. RIVER SPRINGS friends from our kids school who offered so much help and especially were a source of encouragement. Our RELATIONAL TITHE small group who has modeled what living in community is really about. Then there is our CHURCH family who has prayed, encouraged, supported and loved us through the past few months. They brought meals and provided uncountable hours of babysitting.
Collegues at WORK have also been awesome. Keller Williams held a fundraiser for Melody's expenses and so many of Kevin's co-workers have been wonderful and encouraging. Though I am not teaching this fall, my co-workers from the Riverside Student Center have been a blessing since the very beginning.
Then there is another whole group which could almost be called perfect STRANGERS. People who have heard our story through a friend or relative, have read my blog, or have experience with spina bifida themselves. They have been another source of support. People, who though they don't know us personally, have gone out of their way to bless us.
We are blessed with an incredible support system. It is encouraging and humbling all at the same time. If you are reading this you are a part of our support system. Bless you all. We love you and are eternally grateful for your imput in our lives.
Friday, October 23, 2009
What God Can Do
In John 9 Jesus and the disciples come across a man who has been blind from birth. The disciples ask Jesus who sinned, this man or his parents that he was born blind. Jesus responds by saying "you're asking the wrong question." Instead of asking whose fault it is, you should be asking what God can do.
I must confess that at times I feel guilty for having given birth to a daughter with spina bifida. I know in my head that I really had no control over it, but there are times when I feel like I should have somehow been able to prevent it. This passage gives me hope and peace. I don't need to obsess over who is to blame or why did this happen to me. Instead, I look at what God can do.
What can God do with a life. Our lives. Anyone's life. He can do so much. Even if our life is affected by spina bifida. What can He do with Melody's life? Amazing things. Someday I'll know what God has done with Melody's life. For now I anticipate and hope in what He will do.
I must confess that at times I feel guilty for having given birth to a daughter with spina bifida. I know in my head that I really had no control over it, but there are times when I feel like I should have somehow been able to prevent it. This passage gives me hope and peace. I don't need to obsess over who is to blame or why did this happen to me. Instead, I look at what God can do.
What can God do with a life. Our lives. Anyone's life. He can do so much. Even if our life is affected by spina bifida. What can He do with Melody's life? Amazing things. Someday I'll know what God has done with Melody's life. For now I anticipate and hope in what He will do.
Wednesday, October 21, 2009
6 Weeks!
Hannah & Melody
This is what my hair usually looks like!
6 weeks ago I was dreading what the next 6 weeks would hold. Now it is all past. We are well healed and the surgeries are fading in our memories. I can't tell you how thrilled I am to be at this point.
Today we took a little field trip to downtown Riverside. We visited the Historic Mission Inn and walked around Downtown Riverside. The kids were thrilled we covered PE and history all in the same couple hours.
Sunday, October 18, 2009
Just for Grandma & Grandpa!
.... and of course anyone else who cares to watch. I was trying to get Melody moving and cooing.
Saturday, October 17, 2009
Chunking Up
I've noticed that Melody is looking a lot chunkier these days, especially her thighs. This must mean she is eating just fine, despite the fact that I do not feed her every 2 hours as many of the "experts" seem to think I should.
Thursday I took Melody to an assessment with Early Intervention the Inland Regional Center. It was not exactly what I expected, so it remains to be seen if this program is helpful for her. The speech therapist and another lady (not sure her expertise) assessed Melody. They were very impressed with her and most of her development is ahead of schedule. However, she has lower extremity weakness, which of course was no news to me. They have opened her case and will reassess her in 3 months. If she still has weakness in her gross motor skills, they'll provide some help. It sounds like that will be sending some kind of early education instructor to our home once a week to show us how to work with Melody. I'm not sure how this will help as what she will really need is a physical therapist, but we will try it and if it is not helpful, we will stop.
I have been told by 2 sources the California Children's Services is what will provide Melody's PT, so I need to pursue that this week. I also understand that obtaining PT is one of the biggest hurdles we will face with a child with SB. Right now it is pretty early, so I'm not too worried, yet.
Friday I came down with something and ached all over for two days. Thankfully, I'm feeling better this morning. Elizabeth came down with something yesterday, and was vomiting all afternoon and evening. Thankfully, she also seems on the mend today. I'm probably being overly optimistic, but I'm hoping no one else gets it.
Monday, October 12, 2009
One Month Old
Melody is now one month and a few days old. What a month it has been. We are settling in to a crazy routine. Melody continues to sleep well at night waking only once and sleeping 5-6 hours at a time. She is starting to make cooing noises which her sisters love. Thursday we have an appointment with Early Intervention for an assessment. I believe they are the ones who will provide physical therapy. That is our next appointment for now. Here are a few pictures. Enjoy.
Wednesday, October 7, 2009
New to Team
"New to Team" is the box checked at the top of Melody's Spina Bifida Team Center paperwork. We spent three hours this afternoon with Melody's new "team." We saw with the genetic counselor, neurosurgeon, spina bifida pediatrician, nurse/case manager, and pediatric urologist. Overall, the doctors were very impressed with how Melody is doing and we really didn't learn too many new things. She weighed in at 7 pounds even, and the doctors were happy with that. Her shunt is doing well and the doctors seemed impressed with how well her incisions are healing. Her big, bright eyes drew comments from the doctors as well. She can be really alert, when she is not asleep.
The one downside of the visit was that the urologist wants us to continue to catheterize Melody. I had really hoped we'd be able to stop, based on what we were told when we left the hospital. However, the urologist said they never tell parents to cath every 8 hours. She wants us to do it 3-4 times each day, and not at night. We were doing it 3 times/day, so this is not a really big change. There is a test they can run on Melody's bladder to test it's actual function, not just our guesses as to it's function based on cathing. Melody is too small to run this test now. The urologist would really like that test performed before we make decisions about cathing. It really makes sense, to be safe rather than sorry, but I must say I am disappointed.
We are very thankful for this new team. They are an awesome group of specialists and so knowledgeable. Melody will return in two months for her next visit with the team. She'll have a couple of tests run then and we'll also see the dietician and pediatric rehabilitation in addition to all the specialists we saw this time.
After that we'll return when Melody is 9 months old, and then every 6 months after that. When Melody is 9 months old, rehabilitation will do testing where they determine how much movement and feeling she has in her legs. We're a bit anxious to know this, but we must wait and see as it can change for the better between now and then.
The one downside of the visit was that the urologist wants us to continue to catheterize Melody. I had really hoped we'd be able to stop, based on what we were told when we left the hospital. However, the urologist said they never tell parents to cath every 8 hours. She wants us to do it 3-4 times each day, and not at night. We were doing it 3 times/day, so this is not a really big change. There is a test they can run on Melody's bladder to test it's actual function, not just our guesses as to it's function based on cathing. Melody is too small to run this test now. The urologist would really like that test performed before we make decisions about cathing. It really makes sense, to be safe rather than sorry, but I must say I am disappointed.
We are very thankful for this new team. They are an awesome group of specialists and so knowledgeable. Melody will return in two months for her next visit with the team. She'll have a couple of tests run then and we'll also see the dietician and pediatric rehabilitation in addition to all the specialists we saw this time.
After that we'll return when Melody is 9 months old, and then every 6 months after that. When Melody is 9 months old, rehabilitation will do testing where they determine how much movement and feeling she has in her legs. We're a bit anxious to know this, but we must wait and see as it can change for the better between now and then.
Tuesday, October 6, 2009
Can You Tell?
Can you tell my Mom and Dad have returned home and Kevin has returned to work? I don't get on my blog as often and there are fewer photos. Tomorrow Kevin and I will take Melody to her first Spina Bifida Clinic. We're very interested to see what all the doctors have to say.
Spina Bifida Clinic is where all the doctors Melody needs to see come to see spina bifida patients for a day. She will see a urologist, neurologist, etc. all in one place and during one long appointment. This saves having to go to separate specialists. The doctors all meet to discuss each patient as well, which is helpful as well. Melody will be seen here at regular intervals until she is 21 years old. We'll be going every few months this first year, then every 6 months, then once a year.
Tomorrow will be a long afternoon, but I'll try to post after we return.
Spina Bifida Clinic is where all the doctors Melody needs to see come to see spina bifida patients for a day. She will see a urologist, neurologist, etc. all in one place and during one long appointment. This saves having to go to separate specialists. The doctors all meet to discuss each patient as well, which is helpful as well. Melody will be seen here at regular intervals until she is 21 years old. We'll be going every few months this first year, then every 6 months, then once a year.
Tomorrow will be a long afternoon, but I'll try to post after we return.
Sunday, October 4, 2009
Look How Far We've Come!
Melody -- October 3, 2009 -- 24 days old
The following pictures are not for the squeamish among us, however, I know many of you have asked what the spina bifida looked like and how Melody is healing. These pictures are detailed, but I wanted Melody to have them for the future. I just find it amazing how far we have come. Praise God we are past the surgeries and that we have such talented doctors and medical knowledge today to actually do these surgeries.
Below is Melody's myelomeningocele lesion before the closure surgery. The pink skin on the outside is the healthy skin they used to pull over and close the opening. The whitish tissue had to be cut away and the middle more moist looking area is actually the exposed spinal cord! Scary, huh? It had a very thin membrane over it, but was basically considered open. The neurosurgeon pulled the dressing back for us just before surgery so we could take pictures and he could describe the surgery for us.
Healing! Friday, all of Melody's stitches came out! But, before that I took the following pictures. I have not taken any pictures without the stitches, yet. This picture is of Melody's head stitches from the shunt surgery. You can barely see them though her hair, in an arc shape to the upper left of her ear. Just below the stitches you can see a slight bulge, which is the valve of her shunt.
This is how nicely her back is healing. She'll have a scar for life, of course, but we are happy with how well it is healing.
This is how nicely her back is healing. She'll have a scar for life, of course, but we are happy with how well it is healing.
Wednesday, September 30, 2009
Three Weeks Old!
Three Weeks Old!
Daddy, Joel & Melody
Three weeks ago today I had just had a c-section and was holding Melody for the first time. It seems like ages ago in some ways, and such a short time in others. I'm just so thankful to be past all three surgeries and into the healing process. Today we got out of the house for a short walk, so we are definitely getting back into the swing of things. Here are a few pictures of how we're settling back into life.