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.

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.

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.

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.

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.

Elizabeth, Hannah & Joel all sitting in the chair made for President Taft's visit to the Mission Inn. He was our largest president. The kids thought this was pretty cool. About 10 US Presidents have stayed here.

Just for Grandma & Grandpa!

.... and of course anyone else who cares to watch. I was trying to get Melody moving and cooing.

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.

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.

Elizabeth and Melody - I spend a LOT of time in my sister's arms.

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.

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.

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.

Melody just after shunt surgery on Sept. 15th, just 6 days after birth.

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.