Hello!
Yesterday was our follow up with Dr. Qasaymeh at Dent Neurology. This was the first time Dave was able to meet him, he couldn't make the first appointment. Nothing new on the diagnosis front. Everyone will keep researching syndromes and until they can come up with some things for genetics to start testing for (they are very specific and expensive tests at this point), they just keep looking.
Dr. Q. was THRILLED with Chase's progress just over the past 3 months. He was really surprised by his tone and muscle control. He explained it to us like this, there are 3 types of neurological disorders:
Type 1: progressive, meaning the patient progresses at his/her own rate and continues to develop, improve, get stronger and healthier..
Type 2: the type that where the patient will neither progress or regress...
Type 3: regressive, the patient loses skills
He said Chase is definitely a type one, and said, "I can't say this from a medical standpoint, but I would not be surprised if he started getting up and walking".
Sounds good to me! I don't care if he's 10! I can wait...
He's sending Chase for another MRI, we'll know the date by Monday. They're are doing a more detailed one with an MRA...
(courtesy of neurologychannel.com, lol):
A special type of magnetic resonance scan (called magnetic resonance angiography [MRA]) is used to produce images of blood vessels (e.g., arteries, veins). This test is used to detect blood vessel abnormalities such as aneurysms and atherosclerosis (i.e., plaque build-up in arteries) and to evaluate blood flow.
We were nervous about a second MRI for fear of them finding something getting worse. Dr. Q. said he feels that Chase's condition is static. He had a one time, severe hit to the brain, but it won't happen again. He also said if something were getting worse we wouldn't be seeing such great progress.
Yay! I slept really well last night.
We had another swallow study (not so much we as Chase had another one :o) ...) last Tuesday, hehe...he did great, no aspirations. He's ready to pack on the pounds. We took him home and gave him an Oreo. You would have too. Admit it!
Well, Chase has a few new tricks and we finally caught one of them on video...KISSES!!! ENJOY!
Love, Heather
Saturday, June 27, 2009
Chase's Kisses!
Sorry it's not recorded in the best quality and the sound doesn't always line up perfectly...I still love it!!!
Wednesday, June 17, 2009
Developmental Checkup
First of all I guess I forgot to mention that we will be heading to the Kennedy Krieger Institute the 1st week of August. We have appointments Monday and Tuesday...one with Neurology and one with the Director of the Neurodevelopmental Clinic, Dr. Hoon. We are extremely excited/nervous!!!
Dr. Senn is really happy we're going to Baltimore! He has heard Dr. Hoon lecture several times and said he's excellent and we're fortunate to be seeing him. (He isn't familiar with the other doctor we are seeing.) We asked about anything to prepare for the visit, i.e. a follow up MRI, he laughed and said, "DON'T do it here, let them do it there, they're the specialists and he'll do a very specified one". He's sending Chase for a second swallow study next Tuesday to recheck for aspirations and he sent him for hip x-rays yesterday. I took him to the peds office twice in a mini panic because his legs were VERY different in lengths. By the time we got there they were fine and the doctor said if there was a dislocation he'd be in pain. Well Dr. Senn pulled on them yesterday and could make them each miraculously grow an inch and a half without trying. They both look to be dislocated, he said it's just something to watch for now if there's no pain. We have the films, of the hips and of January's MRI, to take to Baltimore...
If the swallow study doesn't show aspirations we'll keep doing what we are to try to get some pounds on Chase. He's up to 20 pounds 8 ounces after going down to 20 pounds while having mono. That's skinny on a 34 inch body! If the test shows aspirations we'll be back in the direction of a feeding tube. They were happy to see the weight recovery after the mono so fast. I think that bought us some time to try ourselves again.
Developmentally he's very happy with Chase's progress. Chase put on a nice show, tried to sit up, laughed and babbled and showed his stubborn side, lol.
He does has one new trick. His favorite new game is "Monster". He gets in your face and makes a quiet noise which very quickly gets REALLY loud until you jump and tell him how scary he is!!! He LOVES it! I have to get it on video.
On to our big announcement. We've canceled the home lift modification. The van modification is on hold. The state is moving slowly on them because of problems with the bid process right now, we have our paperwork in and are just waiting...since the lift won't help without the van, we began to rethink our plan...
We are on a one year savings plan, with assistance from the DDSO and the County...and M&T :o) ...our plan is to buy a house by June 2010. A ranch...open floor plan, in Clarence (the best Special Ed. program around, excellent for High School for Alex as well). Plenty of room for Chase to scoot, wheel or even run, depending on whatever may happen in his future.
Remember Bernadette? Chase's coordinator that we love so much we adopted as our friend? She's also a Real Estate Agent! Is that convenient or what?
Well that's enough for now. Next Friday we see the new Neurologist that we adore...we'll definitely update again then!
Til Then! XOXO
Dr. Senn is really happy we're going to Baltimore! He has heard Dr. Hoon lecture several times and said he's excellent and we're fortunate to be seeing him. (He isn't familiar with the other doctor we are seeing.) We asked about anything to prepare for the visit, i.e. a follow up MRI, he laughed and said, "DON'T do it here, let them do it there, they're the specialists and he'll do a very specified one". He's sending Chase for a second swallow study next Tuesday to recheck for aspirations and he sent him for hip x-rays yesterday. I took him to the peds office twice in a mini panic because his legs were VERY different in lengths. By the time we got there they were fine and the doctor said if there was a dislocation he'd be in pain. Well Dr. Senn pulled on them yesterday and could make them each miraculously grow an inch and a half without trying. They both look to be dislocated, he said it's just something to watch for now if there's no pain. We have the films, of the hips and of January's MRI, to take to Baltimore...
If the swallow study doesn't show aspirations we'll keep doing what we are to try to get some pounds on Chase. He's up to 20 pounds 8 ounces after going down to 20 pounds while having mono. That's skinny on a 34 inch body! If the test shows aspirations we'll be back in the direction of a feeding tube. They were happy to see the weight recovery after the mono so fast. I think that bought us some time to try ourselves again.
Developmentally he's very happy with Chase's progress. Chase put on a nice show, tried to sit up, laughed and babbled and showed his stubborn side, lol.
He does has one new trick. His favorite new game is "Monster". He gets in your face and makes a quiet noise which very quickly gets REALLY loud until you jump and tell him how scary he is!!! He LOVES it! I have to get it on video.
On to our big announcement. We've canceled the home lift modification. The van modification is on hold. The state is moving slowly on them because of problems with the bid process right now, we have our paperwork in and are just waiting...since the lift won't help without the van, we began to rethink our plan...
We are on a one year savings plan, with assistance from the DDSO and the County...and M&T :o) ...our plan is to buy a house by June 2010. A ranch...open floor plan, in Clarence (the best Special Ed. program around, excellent for High School for Alex as well). Plenty of room for Chase to scoot, wheel or even run, depending on whatever may happen in his future.
Remember Bernadette? Chase's coordinator that we love so much we adopted as our friend? She's also a Real Estate Agent! Is that convenient or what?
Well that's enough for now. Next Friday we see the new Neurologist that we adore...we'll definitely update again then!
Til Then! XOXO
Monday, June 15, 2009
Tomorrow...
We have a "big" appointment with Dr. Senn., Chase's developmental specialist who has taken over everything at this point, tomorrow morning at 8am...we'll have an update with all kinds of news then...
Until then...Good Night!!! *Yawn!*
Until then...Good Night!!! *Yawn!*
Saturday, May 30, 2009
Chase's New Hot Rod
I would like to introduce you tooooo.......Chase's very own, Ottobock KIMBA....in the hottest colors you'll be seeing on runways in Milan this year, cool gray (the new black) with a splash of racing orange. Notice the detailing in the design, the wearabilty for the everyday toddler...
We are really in love with the indoor base. You can adjust it to any height, and it takes up so much LESS space than the regular wheeled base. it's more like a computer chair base would be, and he still gets the posture support. He sat at Dave's computer last night and watched Elmo videos for the first time. (The indoor base will stay at home all the time, the outdoor base travels wherever we go.)
Normally the sun cover will stay in the van, but we had to show it off, and he was having a great time playing under it!
This gives you a better view of the indoor base...
We also got the plans from the architect this week and are now getting in contact with contractors for bids.
I got a call from Johns Hopkins yesterday, Friday, the Medical Director went over his records and said if Chase were his child he would take him to the Kennedy Krieger Institute which is on the same campus, and seems to be the "Brain center" there. I had an hour long conversation with them yesterday. Our records are now going to Dr. Hoon who Chase will be seeing there, and he will decide any other doctors he wants Chase to see. We should know when we're going no later than Wednesday. (((FYI for anyone interested: Dr. Hoon is the Director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Kennedy Krieger Institute. He is also Medical Director of the Carter Center for Holoprosencephaly and Related Disorders at Johns Hopkins and Kennedy Krieger Institute, and is an attending physician at Kennedy Krieger Children’s Hospital and Johns Hopkins Children’s Center.)))
Chase's titers for EBV (mono) came back positive, which means he has it, but doesn't mean he has it now. Frustrating huh? It MIGHT mean he was just getting over it. But it might not. He still isn't himself. He is still having late night choking episodes because he's having such heavy build up in his lungs and has such a hard time clearing it himself.
Well I'm off to a Saturday morning MRI. I'm holding off neck surgery for at least a year, they have a new procedure that isn't FDA approved yet but I am SO willing to wait for! They will be able to put artificial discs in instead of more fusing and titanium plates! I won't lose any more movement! I was like, Heck yeah I can wait!
Gotta run, have a great weekend!!!!!
We are really in love with the indoor base. You can adjust it to any height, and it takes up so much LESS space than the regular wheeled base. it's more like a computer chair base would be, and he still gets the posture support. He sat at Dave's computer last night and watched Elmo videos for the first time. (The indoor base will stay at home all the time, the outdoor base travels wherever we go.)
Normally the sun cover will stay in the van, but we had to show it off, and he was having a great time playing under it!
This gives you a better view of the indoor base...
We also got the plans from the architect this week and are now getting in contact with contractors for bids.
I got a call from Johns Hopkins yesterday, Friday, the Medical Director went over his records and said if Chase were his child he would take him to the Kennedy Krieger Institute which is on the same campus, and seems to be the "Brain center" there. I had an hour long conversation with them yesterday. Our records are now going to Dr. Hoon who Chase will be seeing there, and he will decide any other doctors he wants Chase to see. We should know when we're going no later than Wednesday. (((FYI for anyone interested: Dr. Hoon is the Director of the Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine at the Kennedy Krieger Institute. He is also Medical Director of the Carter Center for Holoprosencephaly and Related Disorders at Johns Hopkins and Kennedy Krieger Institute, and is an attending physician at Kennedy Krieger Children’s Hospital and Johns Hopkins Children’s Center.)))
Chase's titers for EBV (mono) came back positive, which means he has it, but doesn't mean he has it now. Frustrating huh? It MIGHT mean he was just getting over it. But it might not. He still isn't himself. He is still having late night choking episodes because he's having such heavy build up in his lungs and has such a hard time clearing it himself.
Well I'm off to a Saturday morning MRI. I'm holding off neck surgery for at least a year, they have a new procedure that isn't FDA approved yet but I am SO willing to wait for! They will be able to put artificial discs in instead of more fusing and titanium plates! I won't lose any more movement! I was like, Heck yeah I can wait!
Gotta run, have a great weekend!!!!!
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