Love Makes Families

Love Makes Families
A family of 7 due to the blessing of adoption!

Thursday, August 29, 2013

Medical update on the boys

Adam has seen several doctors and has many many more appts to come.
We have our primary care doctor. He is an amazing man who has actually adopted 2 kids himself. He read all of the boys' files before they came home and he was prepared for the worst. He was pleasantly surprised by Adam. On paper Adam was not intelligent and unable to do anything. Adam made sure he proved that wrong right away.
In the first week he was in our care, he learned 7 English words (hi, Adam, I love you, hello, and I don't know). He learned to roll over both ways. He had been working on rolling the one way, but hadn't mastered it. Within a few days we nicknamed him rollie pollie. 
Since coming home, he has smiled much more. Learned to tolerate being upright more and more. He can hold his head looking straight upward when laying down (I know that sounds simple, but it would always flop the one side or the other before). He is holding the weight of his head a little bit better. He is drinking liquids (we thicken still, but he could not drink from a bottle or do liquids when we picked him up). I think he is close to between 1,000 and 1,200 calories per day. I believe he was at about 500-700 at pickup.
Our doctor believes he will surprise everyone with what he is able to accomplish. He strongly believes with some therapy, weight gain and possibly surgeries, he will be able to walk on his own.

He has met with the dentist. She is trying to save all but 4 teeth (those top 4 are too far gone).
That will require sedation and a lot of work!!

He has met with his neurologist who was completely overwhelmed, but also ended up being pleasantly surprised. They were planning on putting Adam in the hospital because they thought he would be dehydrated, at risk for refeeding and many other things. They decided to do blood work and a CT scan. All his blood work came back normal including his electrolyte levels. His CT showed that his shunt was not malfunctioning. Apparently this is different that saying it is working though. They set us up with many many appointments, but they chose not to admit him.

He met with a comprehensive health team..... If you have not heard of them, they are amazing. It is kinda like a one stop shop as far as doctors go. It is a team of doctors including pediatricians, nurses, social workers, dieticians and a few others. The lead on Adam's team is kinda like an orthopedic, but she focuses more on muscles. Not really sure what you would call that. They were all very shocked by Adam as well. They had all had a chance to review the medical records we had gotten from B plus the notes from his neurologist. He had the diagnosis of quad cp, club feet, hydro, cataracts, hip dysplasia, dysphagia and a few other things. 
By the time we left, they were pretty sure he did not have 3 of those...... They do not think he has CP. They believe his muscles are just stuck in the same position from being left to lay in a crib for 6 years. He does not have club feet. (I told them I thought both were wrong). His feet do get pulled inward, but again this is a muscle thing from being left lay there. He also does not have dsyphagia and I am not sure why they thought he did. Dsyphagia means difficulty swallowing. He eats very very well!!!!
They believe that him learning to hold his head is our biggest hurdle and there has been talk of meeting with a plastic surgeon. They may decided to do a procedure to decrease the size of his head, so he will be able to make more progress. This cannot even be considered until we know his head is not growing. We will be seeing a PT who specializes in wheel chairs to get Adam fitted for a chair that will help with his hips (which may still need surgery) and holding his head up. We will also be doing some home therapy for his hips, feet and knees with the use of DAFOS, knee immobilizers and an ace bandage. We will not have someone coming in to do these. We will be trained on how to do them, and we will do it ourselves. 

We have an MRI scheduled for the 9th followed by a neurosurgery consult. 
We also see orthopedic surgery that same day.
On the 12th, he sees PT for a wheelchair fitting.
He was supposed to see GI, but they felt we did not need to see them.
The dietician was very impressed and opted not to even come in to talk to us. She told the doctor to keep doing what I am doing after I told them what he eats for breakfast :)
1 c whole milk. 3 scoops baby rice cereal. 3 scoops baby formula. 1 TBS olive oil. 1 TBS strawberry syrup for flavor. She also thinks double milk in his bottles is ok. Mixing formula into whole milk instead of water.
My mom went with me and was very proud. The doctors all asked if I had a medical background because I research everything they say my kids have and use all available resources.
We are waiting for an appointment to be fitted for DAFOs and knee immobilizers (to help keep his legs straight). 
We also have an appt with opthamology for his eyes on October 8.

We have had a lot of appointments and we have a lot more to come, but Adam is making great progress and continues to shock and inspire all he comes in contact with!!

Matthias has only met with a few doctors so far, but he is in better health overall than Adam.
Our primary care doctor was inclined to believe that Matthias was in fact "retarded" as the records from B indicated, but I quickly sent him in another direction. 
If he cannot hear, it makes sense that he is delayed in many areas. On top of being deaf, he was taught not to look at adults. How is this child supposed to learn to communicate if he cannot hear, he cannot look at you and they never touched him. As a result Matthias gets sensory overload a LOT. We still are working on getting him to look at us, but it is a hard one for him. He is definitely not dumb by any means. He always manages to express what he wants. He is lovable (even though it overwhelms him after a while). The doctor decided to test his hearing the easy way first. He clapped his hands as loud as he could in both of his ears and Matthias did not even blink. (Meanwhile across the room Adam jumped). 

We went to see the audiologist and they conducted a few tests. The tests confirmed that Matthias was deaf. He cannot hear anything at all in normal range. He does not have any holes in his eardrums, but they also do not have much movement. I believe she said they were shallow. 

We go to the hospital for a sedated ABR on the 13th. (yes, that is a Friday). They will put him to sleep and find out at what level of volume his brain starts responding to sound. This will determine if hearing aids will help or if we will need to look into cochlear implants (please pray that hearing aids will help him). They told us not to get our hopes up that hearing aids will help, but with God all things are possible!! 

He also went to the dentist and does not have a single cavity. We are not making any other appts for him right now until after we get his hearing figured out. The only other thing he may need is some therapy for walking or equipment.... possibly braces. He walks on his toes (or tries to) plus he holds his legs weird.

All in all the boys have made great progress since they have been home (just 2.5 weeks).

I encourage everyone to set up appointments as soon as you have an idea when your child may be home. I am so relieved to know what all is going on and get these boys the help they finally need.

1 comment:

  1. Just wanted to say I really admire what you're doing and I'm looking forward to seeing these children grow and develop under your care. Love to you all.