She is as sweet as a baby can be. She is actually the best baby we have ever had. She is happy and content. We love her dearly. I have been doing therapy with her, on my own, since she came, thinking if she just had a little help, she would progress and catch up. When she turned three months old I realized that we needed to seriously look into a possible cause and diagnosis to explain the issues she is having. Not that I am a parent that likes to put a label on a child but if we know exactly what her diagnosis are, we can help her progress better and insurance will pay for more therapy and equipment, if she has a concrete diagnosis they can't argue with. So we started down the long road of going to specialists and running tests. Crossing things off the list and adding more to check out. Many times one appointment leads to one or two more. She is very worth it.
We are still in the middle of appointments and tests but I wanted to share with you what we have found out to date and what she is doing. This is not only an update for family, friends and for people considering doing foster care but for people out there whose child has been given this diagnosis and would like to compare notes and glean, information. So this is going to be a very long and boring post many people may wish to skip. :)
When baby "K" came, the first red flag I noticed, was her very low muscle tone. This is called Hypotonia. I was very concerned about this, as it was so low, that when I dressed and bathed her, her joints would pop, creak and slide in and out of place. My husband and I also have to be very careful when we handle her, as she is very floppy and her arms and legs move into unnatural positions and can easily get hurt, if we do not constantly pull her arms into a more natural place when changing diapers, feeding her and playing with her.
This tone is so low throughout her whole body, it is effecting her ability to urinate, have a bowel moment, swallow safely, keep her tongue in her mouth, keep her formula down, and progress to meet expected milestones. I have been working hard with her daily since she has been here, patterning her how to roll over and she rolled over at four and a half months and still can't do it regularly. She only started cooing at three months old and has not done that consistently or daily. She just started to coo at me when I talk to her a few days ago at five months, one week old. She can hold her head up now for short periods and pick her head up while on her stomach for about 10 minutes. She can sit in the Bumbo chair or be in her jumper now for about 15 minutes without fatiguing.
She is still struggling with her eye sight. She only acknowledged light and dark till three months old. Then started to be able to track large objects in a distance, with light behind them, like a person walking by but it was very delayed and slow. Then, at four months old, she started looking toward our faces and smiling. She does look at our eyes some but mostly slightly above our face, kind of at our fore head. Now at five months two weeks, she can track an object if I wiggle it but have to move it very slowly and she does not follow it smoothly and tracks very delayed. We are grateful she has some vision!
So far we have taken her for evaluations in Physical, Occupational and Speech therapy and she easily qualified for all of them. I actually had her evaluated as soon as she arrived as I saw the tone issues she had and knew from past children with this, that she would need to get started in therapy right away. I am so glad I did that, as she is still not receiving therapy yet three months after qualifying because of paper work with government insurance taking so long to approve it. So in the mean time, I am still working with her here at home.
We took her to a pediatric ophthalmologist and her eyes and optic nerves looked perfect, Glory to God! He said she either had Delayed Visual Maturation where her vision is just very delayed in maturing. OR... Cortical Vision Impairment where her eyes and optic nerves are perfect but her brain is not interpreting what she is seeing properly. From what I have read, people with CVI can have holes in their vision like looking thru Swiss cheese, have only peripheral, only tunnel vision or a mix of it all. On top of that, they also see as if looking thru a Kaleidoscope. They can learn to use the vision they have by viewing things very close up, so they have less clutter in their field of vision for reading or eating. They also can learn to see in familiar environments but when out in public, with so many things changing all the time and so much clutter in their visual fields, they are legally blind and have no depth perception and need help. So we are waiting to see what the verdict is on that. She also has Strabismus. That is where the eyes don't line up in the same direction. Hers both are outward. She may need surgery to correct it.
She was also sent for an MRI. The MRI was scheduled to see if she had birth trama (an area of brain damage caused by oxygen deprivation during delivery) that is causing her low tone, eye issues and any number of other things she has going on. There are many things that could cause these issues such as a syndrome. So we needed to start somewhere to get answers.
What was found out is that she has a very Thin Corpus Callosum. The proper medical term would be Hypoplasia of the Corpus Callosum. The Corpus Callosum is the bridge, consisting of over 200 million nerves, that the two halves of the brain comunicate thru. So her bridge is very small and the two halves of her brain are not able to communicate properly in a lot of areas. I guess like trying to meet the electrical needs of a large city on a small country towns lines.
From what I have gleaned from hours and hours on line, is that HCC and other Corpus Callosum issues are a wait and see thing. No one knows the full potential of each child with it. It effect everyone differently. All the way from mild to profound. This is a hard thing to hear, for loving parents that want to know what level their child will function at in the future. Or for those that find out while pregnant, and are trying to decide whether they should continue with the pregnancy... :(
To make this whole thing even harder to understand...some adults have had MRIs and found out that they were missing either part or all of the Corpus Callosum and are fine or have had just mild struggles their whole life and didnt know why till the MRI was done. Others...need total care in all areas their whole lives. Wow...there is just so much we don't know or understand about the human body and how it functions.
The good news is that this condition will not get worse. So the level a child is at, they will not get worse or regress because of this. Many of the children that have this though, also have a syndrome and that can cause issues. Also, a child born with this, can develop seizures any time in their life.
A good thing is, that God made our brains so amazingly well, that through lots of therapy, the brain halves can be taught to work together and either use another path, make a new one or do without to get a task done such as co-coordinating walking. A whole new area of the brain can take over to compensate. So huge delays in development are expected with this diagnosis but progress in many can happen.
So what do we know? That baby "K" has HCC for sure. That she does indeed have many huge issues from it. That Glory to God she is progressing, just very, very slowly. This is very encouraging! That she also has some vision issues going on that could complicate her progress. That she is cute and sweet and we love her so much! We are going to do all we can for her as long as she lives with us!
What do we still need to find out? Does she have a syndrome that this is part of or is this from drug exposure? We need to find out her exact diagnosis with her eyes and how well she can see so we can add vision therapy if needed. If she has any abnormalities in her urinary tract causing her the issues she is having. (urinating only once every 8-12 hours or so or is this from low tone.
I guess I have not really clerified anything for anyone, as the diagnosis can be so different in everyone. But as I did my research on the internet, there is a ton of information out there on people either missing some or all of the Corpus Callosum but hardly anything out there on people with a thin or Hypoplastic one. I have read countless blogs on babies, children and adults with missing or partial missing CC's but hardly any stories of children with HCC like baby "K". I just wanted to see what those children were like when they were born, how they functioned and how they progressed. Just like any parent wants to read about when facing this. So I thought I would write this post and try to put in all "K" can do and at what age, what things she has going on medically and the road we are taking to unravel it all. Maybe it will be helpful, encouraging or comforting for others.
If you have read thru this far, thank you so much for hanging in there with this lengthy post and please keep baby "K" in your prayers.
May the Lord God in heaven, hold all of us but especially children with special needs, in the palm of His mighty hand. May healing and health flow from the shed blood of Jesus Christ upon these children. May we all be shown the best course of action, for our lives, to reach out and be the hands and feet of Christ toward them all.
2 Corinthians 5:7 (For we walk by faith, not by sight:)