(warning spell check died on me! Waaaaah!!)
Wow! At the end of last month, we had an exciting couple of weeks trying to figure out, what happened to this boy~
It was an emotional roller coaster to say the least. I don't handle stress well, I caught the kids yucky cold and that turned into bronchitis for me. The kids are still all sharing the cold. Here we go again! :o) Round 2!!
We were so excited after the MRI and Dr to share that Arachnoid cysts are not terminal and do not end life.............. per say.
But they do have other causes and/or complications.
Remember when I said I knew something was terribly wrong, because my momma's intuition could tell. I did not want to be right about this-http://theroaddownhome.blogspot.com/2012/10/what-have-they-done.html
And sadly I was.
As soon as Jacob came home I would list off to Tom every observation I had that was worrisome to me. But I'd been too tired and busy to add them all together.
Until I read the information sheet from the radiologist. Then I wrote them down because they matched. Yes, I'm afraid my intuition has again led me to another correct conclusion.
The things I observed Jacob with are~ left leg muscle weakness, right leg stiffness, normal torso, shortened legs, both legs thin-left leg thinner, mood swings, nystagmus (no, not un-common), uncontrollable movements-side to side shaking and forward/backward shaking, focusing difficulties, poor concentration, holding things in his left hand with a clamping grip not able to let go, right arm and hand do not cooperate together, poor right arm strength, poor right hand control, o.k. strength in left arm, seemingly "out of it", swallowing difficulties. Just to name a few and stop before I bore you! (I know I think too much! LOL!)
The complications possibly associated with Arachnoid cysts are~
*headaches (he can't tell us)
*seizures (we are watching)
*hydrocephalus (so far no)
*increased inracranial pressure (no signs, yet?)
*developmental delay (well DS did that already)
*behavior changes (mostly odd behavior)
*hemorrhages (hopefully no)
*decresed cognitive performance (again, DS is part of him)
*hemiparesis (weakness or paralysis on one side of the body) (yes)
*Ataxia (oh precious Lord in Heaven, please, no)
The pediatric neuro, as nice as he was, said so little to Tom, that Tom was actually relieved. But I was not. I had not been able to go with. And I wondered what would he think of my observations?
There of course is nothing one can do but watch. Re-test in a year. And see him sooner if we see anything new.
We've dealt with neurologists who could do nothing to help us before. We do not fault them in any way. There are things that there is no medication for; and things that there is little help for, other than to provide comfort, and we found that out with our Molly.
We adopted Molly with CP and a TBI (Traumatic Brain Injury) when she was 5. And we parented her that way for TEN years. For TEN years we thought this was what CP and a TBI were like.
Slowly our OT and PT people started saying "we" weren't helping her enough, feeding her enough, caring for her properly. She was losing skills thanks to our "neglect". I knew she wasn't gaining skills, but didn't some kids stay the same?
And then her pediatrician chimed in with suggestions. So we did as they requested. We force fed Molly to gain 10 pounds on her tiny frame only 4' tall and 60 pounds. All of the weight went to her belly. Her legs were like little chicken legs. (A common description for Freidrichs Ataxia, the most common Ataxia.)
Then school complained that she could barely move she was too fat! Fat?? ugh. It was a horrible time. Thankfully, God blessed us with an amazing new child psychiatrist here, who was also a pediatrician! (Molly had depression- and for good reason) He looked at us and said "Let's put her in the hospital and figure out what's really wrong here."
(We had adopted Molly after our baby Joy had died. I had told our agency that we would adopt her only if she would not die. (dumb-huh!) Our social worker said- kids don't die from CP or TBI. And God said "Quit telling Me your limitations!")
What was really wrong with our Molly, was Ataxia. The severest genetic form. Finding out which form doesn't really matter. There are many types. All are treated the same. No cure.
Molly's onset was from birth. Did she have Arachnoid cysts? I don't know. They did not spend a lot of medical time with her diagnosing or testing, because they knew the Ataxia would run its course.
I was devastated, I did not want to lose another child.
During this time the neurologist, who was the National expert on Ataxia lived in our city. His family had Ataxia in their DNA, he wanted to cure it. Molly never got to see him, he was more than busy. But he did have a phone consult with me. He advised us not to get her a gastric feeding tube, to let the Ataxia run its course without it. In fact his words were "You can't keep the wolf at the door at bay". (Hope I am saying that right, I was shocked.) But she was 15 years old and in my heart I could not watch her unable to swallow food to the point of dying. So even though she could have died from the gastric tube procedure, (her breathing was shallow) we could not stop feeding her. The expert Dr told us she'd live to her early 20s. But with her gastric tube in place, Molly had the will to live to 27. She was my hero. (She also had scoliosis that could not be operated on causing her back to arch outward. painful :o(
But back to Jacob. :o)
I'm thinking about him and praying non-stop. The similarities between the 2 children are shocking.
So of course I go to God~ "Lord, I thought Jacob had DS?" (God tells me-"he does") "But Lord? What is this other stuff? Lord, is this Ataxia..............again?" And you can agree with me or disagree with me, but I heard the Lord say "yes".
The Lord spoke to my heart.
He told me- remember how you thought you weren't a good enough mother for Molly because her cares were so hard? You didn't know what it was. You were criticised until it was diagnosed. You were afraid to trust your insticts for fear of what others might think.
Remember how you thought when she couldn't swallow that she was refusing to swallow because she was mad at you?
Remember when she screamed and cried for hours if she was told something she didn't like.
Remember how moody she was, and you wondered if she'd ever like you even a tiny bit. So you reminded her she couldn't get rid of you, you were her 6th mother- her last mother!
Remember when you were so happy that she was Daddy's girl because it didn't matter if she loved you, but she needed to love someone. You told her you could love her without her loving you back.
Remember how you cried when you told Children's Home Society she was dying and you were probably the worst mother she could have had. And they told you "Look what a mamma tiger you've become for her!" Remember how scared, alone and un-worthy you felt? Always questioning if you did the right thing?
You did. And so with everything you know. You will be a mamma LION for Jacob. And you won't second guess anymore about anything, because Molly taught you. You are the right mom for both, I chose you to be their mom.
God's Hand is in EVERY tiny detail.
Praise God, because I am truly unworthy of ALL He blesses me with.
p.s. they both also share cerebellar hypoplasia, cerebellum is smaller than usual.