Our EI meeting went fairly well as we are going to start Oliver on more therapies and see how he tolerates them. He'll have PT and OT once per week each and then Speech twice a week with one of the sessions focusing on feeding. We are also going to have him evaluated for vision (finally, should have a phone call by the end of this week) and by a developmental therapist. We'll be meeting with a social worker once per month to help navigate resources available in the city/state.
A year ago , when Oliver was diagnosed, I never would have imagined a meeting in which I blatantly discussed the disabilities of my child and what we can do to make it easier on all of us. Even as I was sitting in the meeting looking around at all of the therapists, I was thinking to myself "I can't believe this is my life". It took a lot for me to be positive and ask the right questions and write down the tasks I need to complete without breaking down into tears.
I am learning more about navigating the special needs world and I'm finding that a lot of it is unfair. Kids that need so much receive so little. It really amazes me. I hope that we're lucky enough on our journey to get what we need for Oliver with minimal fighting but I think many things will be a battle.
The good news is that Oliver's bath chair has been ordered. The bad news is they never did order more supportive seating for him for meals and therapy. So we're going to go through the physiatrist at RIC and see if she can help us at least get him fitted for all of the equipment he needs and then we can try and order it through EI even if it takes a long time to arrive.
He has been fairly stable health-wise and we are so grateful for that. He's been teething up a storm and now has 12 teeth! The seizure count is lower the past 2 months and we're hoping that trend continues. We have about a month left on Vigabatrin and then he'll be seizure med free. We're crossing our fingers we can get to that point and see how he does without meds. During the wean we were hoping to see more alertness and strength. I'm a bit disappointed that we haven't as it means that a lot of his delays are likely caused by the CDG and not so much the medication. We'll see how his next EEG looks, hopefully he'll have one in the next two months.
On the GI front things are about the same though he seems to be doing better having bowel movements every day or every other day without help from suppositories. This is since starting the carnitor supplement. We hope to try the motility meds in May and see if that gives him the relief from the awful reflux that keeps him unable to eat most foods.
Tobin is happy, healthy, thriving and looking forward to warmer weather so he can go to the park and the beach. We consistently have temps in the 30s and we're all ready for spring to finally arrive!
Wednesday, March 30, 2011
Thursday, March 24, 2011
ENT, ERG, AFOs , OH MY!
Oliver had his one month checkup at the ENT. He had an audiology screening to do the hearing test. They were unable to get the thing working properly in his right ear but his left ear passed the newborn hearing test again. They couldn't do the other tests because he's not 7-8 months developmentally :(
They recommended we do an ABR (sedated hearing test that measures what the brain processes through the ears) if he is to be sedated for any reason, perhaps when he's closer to 2 if we do a repeat MRI. His ear tubes are in and look fabulous. His ears look very clean and healthy.
He had his 4th ERG today to check his retinal function as required by SHARE while on Vigabatrin. NO changes since the last ERG and everything looks NORMAL! :)
We are just about 5 weeks from being completely off the Vigab medication so we're hoping that was our last ERG (maybe we'll do one more in about 6 months just to make sure everything still looks good).
GI Issues still there though he has some really good days with minimal crying (maybe 10-15 min fits instead of 3 hour long ones). We started Prevacid for the reflux in the am, while continuing Zantac at night just today so we'll give that about a month and then move on to the motility meds as recommended by the GI doc (we go back to GI on May 3rd).
Oliver should be getting a Benik vest, AFOs for his ankles/feet/legs and a hip helper on April 8th. On April 14th we go in to get fitted for a stander.
We have our annual EI meeting tomorrow afternoon and I will be asking again when our vision eval will happen (was requested a few months ago...apparently the place that does the evals is giving our EI coordinator the run around ), We also need to inquire about the bath chair and feeding chair we requested 4 months ago and ask for more services (would like speech and OT once per week and PT twice per week, along with feeding once per week). Wish us luck!
They recommended we do an ABR (sedated hearing test that measures what the brain processes through the ears) if he is to be sedated for any reason, perhaps when he's closer to 2 if we do a repeat MRI. His ear tubes are in and look fabulous. His ears look very clean and healthy.
He had his 4th ERG today to check his retinal function as required by SHARE while on Vigabatrin. NO changes since the last ERG and everything looks NORMAL! :)
We are just about 5 weeks from being completely off the Vigab medication so we're hoping that was our last ERG (maybe we'll do one more in about 6 months just to make sure everything still looks good).
GI Issues still there though he has some really good days with minimal crying (maybe 10-15 min fits instead of 3 hour long ones). We started Prevacid for the reflux in the am, while continuing Zantac at night just today so we'll give that about a month and then move on to the motility meds as recommended by the GI doc (we go back to GI on May 3rd).
Oliver should be getting a Benik vest, AFOs for his ankles/feet/legs and a hip helper on April 8th. On April 14th we go in to get fitted for a stander.
We have our annual EI meeting tomorrow afternoon and I will be asking again when our vision eval will happen (was requested a few months ago...apparently the place that does the evals is giving our EI coordinator the run around ), We also need to inquire about the bath chair and feeding chair we requested 4 months ago and ask for more services (would like speech and OT once per week and PT twice per week, along with feeding once per week). Wish us luck!
Friday, March 18, 2011
March Madness
March is full of many appointments for us. This morning Oliver went to the Rehabilitation Institute of Chicago (RIC) where we see a great physiatrist. He was fitted for AFOs (ankle braces), a hip helper (basically bike shorts that keep his hips in line) and a Benik Vest (it's a neoprene vest to help give more trunk support). We were waiting for all of this through early intervention but it was taking way too long to get going. The physiatrist said they could do it all through their office and had us scheduled for fittings within two weeks! Now we hold our breath praying insurance will cover all of this cool gear. It is very vital for Oliver to have the support that his body cannot provide to avoid risky surgeries in the future. No baby should have to go through hip surgery!
Next week we'll be having our first hearing test since Oliver was born and then we will follow up that same afternoon with the ENT to check out the tubes in his ears and make sure they look good. Later on in the week he has his next (and hopefully last) ERG to check his retinal function as a part of the Vigabatrin prescription. It's required by the company that makes the drug because there is a known issue of kids having permanent vision loss when they take the drug in high doses for long periods of time. On Friday we'll finish up our week with a meeting with our EI team. The coordinator, physical therapists, occupational therapists and feeding / speech therapists will all attend to make plans going forward for Oliver's therapy. We're hoping to get everyone to agree that he needs speech/feeding and OT more than he currently gets.
March also has us continuing our Vigabatrin wean. Oliver is now on 250mg in the morning and 500mg at night. This is step 3 of our 6 step wean plan so we're about halfway done with our wean. Knocking on wood as I say this but so far we've seen about 1 seizure on average during each 2 week stage of the wean! Pretty good!
Oliver's development is still at a bit of a standstill though he does seem to have more moments where he seems very strong as we continue on the wean. He is able to get some good head lifts in while on his tummy though he cannot hold his head up for very long. His vision is still pretty bad and that bothers me a bit as I had hoped to see improvement as he got older. I have to keep reminding myself that he has a lot of chaos in his brain and that maybe some day it will get better.
His GI issues are still there but he has some good days. I think the Carnitor supplement has helped a bit and we have not had to use suppositories in quite awhile. We have a prescription for Prevacid we picked up but we haven't started using it yet because we are nervous it will bring the seizures on (it contains aspartame, a known seizure trigger). Once we get settled into this current phase of the vigabatrin wean we will try the prevacid in the mornings with the zantac at night and see if that improves Oliver's reflux issues. They aren't too bad but he squirms a ton while eating and we can only think it's reflux or perhaps the infant high chair that he has outgrown (still waiting on a feeding chair from EI, hopefully that will come along soon!)
Everyone else in the family is doing pretty well. Tobin moved up to his Pre-K classroom at school and is really thriving there. He loves his friends and his teachers. We all took a one night trip up to Wisconsin to a hotel and water park while Oliver stayed behind with Grandma Patti. Tobin loved the attention and the fast waterslides. Jason and I really had a great time being able to just focus on Tobin and playing without worrying about meds, meals or bouncing the cranky baby around the house.
We are looking forward to spring and walks outside and the chance to get Tobin to the park to burn off some of that four year old energy.
Next week we'll be having our first hearing test since Oliver was born and then we will follow up that same afternoon with the ENT to check out the tubes in his ears and make sure they look good. Later on in the week he has his next (and hopefully last) ERG to check his retinal function as a part of the Vigabatrin prescription. It's required by the company that makes the drug because there is a known issue of kids having permanent vision loss when they take the drug in high doses for long periods of time. On Friday we'll finish up our week with a meeting with our EI team. The coordinator, physical therapists, occupational therapists and feeding / speech therapists will all attend to make plans going forward for Oliver's therapy. We're hoping to get everyone to agree that he needs speech/feeding and OT more than he currently gets.
March also has us continuing our Vigabatrin wean. Oliver is now on 250mg in the morning and 500mg at night. This is step 3 of our 6 step wean plan so we're about halfway done with our wean. Knocking on wood as I say this but so far we've seen about 1 seizure on average during each 2 week stage of the wean! Pretty good!
Oliver's development is still at a bit of a standstill though he does seem to have more moments where he seems very strong as we continue on the wean. He is able to get some good head lifts in while on his tummy though he cannot hold his head up for very long. His vision is still pretty bad and that bothers me a bit as I had hoped to see improvement as he got older. I have to keep reminding myself that he has a lot of chaos in his brain and that maybe some day it will get better.
His GI issues are still there but he has some good days. I think the Carnitor supplement has helped a bit and we have not had to use suppositories in quite awhile. We have a prescription for Prevacid we picked up but we haven't started using it yet because we are nervous it will bring the seizures on (it contains aspartame, a known seizure trigger). Once we get settled into this current phase of the vigabatrin wean we will try the prevacid in the mornings with the zantac at night and see if that improves Oliver's reflux issues. They aren't too bad but he squirms a ton while eating and we can only think it's reflux or perhaps the infant high chair that he has outgrown (still waiting on a feeding chair from EI, hopefully that will come along soon!)
Everyone else in the family is doing pretty well. Tobin moved up to his Pre-K classroom at school and is really thriving there. He loves his friends and his teachers. We all took a one night trip up to Wisconsin to a hotel and water park while Oliver stayed behind with Grandma Patti. Tobin loved the attention and the fast waterslides. Jason and I really had a great time being able to just focus on Tobin and playing without worrying about meds, meals or bouncing the cranky baby around the house.
We are looking forward to spring and walks outside and the chance to get Tobin to the park to burn off some of that four year old energy.
Friday, March 4, 2011
Sabril Wean Step 2
Oliver had a great ear surgery. Did very well, no pain meds needed.
We met with a physiatrist and she is going to help us with some equipment and stuff for Oliver. Stander, Core/Trunk Support Vest and a hip helper to keep his hips from turning out all the time while he's laying down.
We dropped our evening Sabril dose last night and have now embarked on Step 2 of the Sabril wean....
We met with a physiatrist and she is going to help us with some equipment and stuff for Oliver. Stander, Core/Trunk Support Vest and a hip helper to keep his hips from turning out all the time while he's laying down.
We dropped our evening Sabril dose last night and have now embarked on Step 2 of the Sabril wean....
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