News of Malachi has kind of been a rollercoaster lately and I've debated whether to post on it yet. I haven't because I wanted to wait until we had something more concrete. But I've realized that may take awhile so I might as well let everyone in on exactly what's been going on.
If you've been watching my Facebook you'll know some of this because I have been updating on there. Malachi is about 10.5 months right now. In March during his 9 month well child visit our doctor and I talked about the why Malachi wasn't sitting up independently even a little bit. She noticed low muscle tone in his abdomen so she referred us to MUSC (Medical University of South Carolina) Pediatric Neurology in Charleston (about 2.5 hours away). She also referred us to BabyNet, which is a state program here in South Carolina that provides free early intervention for developmentally delayed children.
First, in order to see MUSC Pediatric neurology we had to see the Pediatric Developmental Delay Department first to get a referral from them. But in order to see them, we had to fill out packet, mail it in and wait to be accepted. Fortunately, a clinic was cancelled which freed up the PDD department during spring break and we were accepted and asked to come in the next day. It was a long appointment. They ruled out autism because of his social behavior. He just seemed to be lacking in his gross motor skills (his fine motor skills were normal), and had low muscle tone in his trunk, but great strength. Because of his past history of failed and barely passing hearing tests they thought it was best to have him see the Pediatric Audiologist at MUSC. They also ordered a MRI of his brain to confirm there was nothing wrong. We made an appointment with Pediatric Neurology and scheduled a follow appointment with developmental delay.
During all of this we had an evaluation done with Baby Net which determined that he failed in speech, motor, and cognitive milestones. This enabled us to get an Early Interventionist Coordinator who would be our "case worker" of sorts to help us get any help that Malachi needed. She has been working with Malachi while the paper goes through to get his Physical therapist and speech therapist. She has already helped him make great strides in helping him learn to sit up independently and also sit straight.
We decided to also have him see our chiropractor. He noticed that Malachi's spine was very out of alignment and he has been adjusting him twice a week for about three weeks. Malachi sleeps better and is much more flexible and mobile since seeing him.
On Monday we went to MUSC for Malachi's MRI and hearing test. He had to be sedated for his MRI and the worst part was getting the IV in. He is so squishy they had a hard time finding his veins and blew the first one they tried. He is such a good and patient little boy. After they succeeded with the second IV I was able to hold him while we waited for the ICU doctor to administer the meds. The nurse said Malachi probably wouldn't like her anymore because she had given him the IVs. After he had calmed down he started playing with her and giggling with her. It was truly amazing how forgiving and loving he was. It took a lot to sedate Malachi. He normally fights sleep quite a bit and they ended up putting him on a drip to get him to stay asleep. As soon as the MRI was finishing up they turned off the drip and he immediately started moving. They told me they barely got the MRI done. He snapped out of it pretty quickly and became his old self.
Next we went to the hearing test. Just as a little background, what we told her, was that Malachi failed his left ear at the hospital, and didn't pass 2 other screening we did at 1 month, 2 months, and at 3 months "barely" passed an electrode screening where he wasn't very quiet. She performed a hearing test on him and he basically didn't pass. He wasn't very cooperative. What concerned her was that she played really loud screeching sounds (which killed me and Brian's ears) and he didn't have any reaction what so ever. Not looking up or a jump or startled look. So she wants to do a full diagnostic ABR with sedation in June. This is the same test they use to custom create hearing aids so we will know exactly what he can and cannot hear.
After being home for the last few days and speaking with the Early Interventionist teacher, we've realized that Malachi really isn't hearing well. There are certain things he should respond to that he isn't. And we've noticed he responds to vibration or feeling things more often than he does sound. Now, there is a HUGE spectrum of hearing loss. And to be honest we are just anxious to know exactly what is going on so we can help him. We're not flipping out that our son might be deaf. We both know people who are deaf that live perfectly happy and normal lives. I'm not scared of the challenge, I just am ready to know exactly what the challenge is so that we can face it and move on.
I'll continue to try and update so that I can keep everyone in the loop.
8 comments:
You are so strong Kendra, and Malachi is VERY lucky to have you as his mom. Remember that Heavenly father is always with you, and when you feel he is not beside you he is most likely carrying you. I love you and if you need anything let me know, I'll try to help in a heart beat.
Apryl
Kandra- thank you for the post. I've been following your updates on fb and wondering how it's all been playing out. You are such a strong woman and I know you will rise to any challenge and come through for Malachi and give him whatever support he needs. He is a sweet baby and is such a blessing to your family. I'm sure you are just so grateful that he's healthy and happy. Everything else can be dealt with! Love, Laura Moss
Way to go Kandra! It sounds like you're right on top of the situation and you are probably more than right--it will take a long while to get to the bottom of things. He sure is the most adorable little guy. Hang in there. Love you, Aunt Suzy
Thanks for the update Kandra. We will keep your family in our pryas. Adam had to have a series of IV infusions when he was a baby. After many failed IV attempts a nurse told me it is really easy to find veins in their head--I was sold and from then on out I asked when we got there to put the IV in his head. They say it freaks parents out but it was much better than the whole arm IV. You may want to try it--they may not do it but it was a blessing for us.
Kandra, I had no idea this was going on ( I guess I need to check fb more often). You seem to be taking everything well in stride. You are amazing. We hope you get all of the answers that you need so you can start his progression. I have heard not knowing is worse than about anything. Our prayers are with you and your family.
First I have to say that Malachi is so cute! I love his blue eyes! And he's sitting well in that picture :) I hope that the Drs find concrete things out soon. I send love and prayers your way. Good luck :)
So interesting, Kandra....I work in the Neurology department at the University of Utah. I hope and pray that the right diagnosis is made so he can be treated and helped correctly.
kandra, you are so amazing. i know this is a few months after your post, but i just want you to know that i admire how well you and brian are doing with this. anything even remotely different in our babies from what is normal can send us into a panic so easily, but i'm so impressed with how you guys are taking it all in stride. malachi is so blessed to have such wonderful parents to help him through his differences. i love you guys and want you to know i am praying for you and your little man! stay strong; you are so wonderful.
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