So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!
Well a week ago we headed to McMaster to see Neurology. We have not seen this neurologist since January 2007! The last time she saw A he was tiny and still on oxygen, so needless to say he has changed a lot in two years!
When we used to see this doctor way back and the discussion of A’s “episodes” came up she always felt that they were reflux related. We would see his GI and she would feel they were neurological. I felt pulled in all directions and didn’t know what to think. However today after giving her an overview of the past couple of years since she has since him, it has become very clear that these “episodes” are not reflux related at all. That in my mind is the only thing that has been ruled out with what could be going on with him.
She agreed that she did not believe they were seizures but that we should have another extended video EEG. Of course nothing happens quickly and she didn’t think that it would be until Spring!
So all in all not an appointment that seemed to get us anywhere but I didn’t expect it to. She did tell us that there was one little boy who she remembers that there were no answers for. It is tough for me to think this about A but at the same time all I can do is continue to do what I am doing and advocate for him and his needs.
So the past few weeks I have been trying to put A in his Pony walker. It is quite funny because initially he HATES it and screams but once he realizes that he can move he is fine.
He has not figured out how to turn it or back up so he does get frustrated when he hits something and can’t push through it! haha But lately his thing has been going into the kitchen. Maybe this is because he doesn’t ever go in there so it is exciting for him, but nonetheless it is adorable! He gets SO excited and starts babbling away as he is entering the kitchen and then he heads right to the back patio door. As you will see in the pictures at the bottom, it is priceless. I can’t even look at those pictures without tearing up. The things so many of us take for granted and yet a child who can’t just walk to a door and window and look out takes so much pleasure out of it.
Well yesterday was the day that we went to meet the new neurologist that I have been waiting to see since October of 2006! I obviously had high hopes after such a long wait and with it being a new neurologist that we have never dealt with.
Before heading out…
Grandma and grandpa picked A and I up at 11am and we headed to Toronto. Our meeting was at 1pm and I spoke with his resident for about 45minutes before she left to go chat with the actual doctor I was wanting to see. We had talked about everything from pregnancy to the birth to his NICU stay and beyond.
Well long story short the doctor wasn’t very helpful at all. He came in and introduced himself and then went right into asking me to describe these “spells” that A has. Immediately he told me that he believed that they were seizures. I was so upset! Less than an hour earlier when I was describing them to his resident she agreed that if they had gotten better after the gj placement then they most likely were not seizures. And NOW I had this doctor telling me otherwise. I just don’t see how doctors can make a decision like this without ANY form of evidence. (I had meant to bring my video with me but of course I forgot it so I wasn’t able to show him.)
I told him that I was not willing to put A on meds for seizures if this wasn’t what was happening FOR SURE. Before I would even consider these to be seizures (which I highly doubt I ever will) I need everything else ruled out first. Cardiology is out so now we have ENT and his reflux issues left. And of course these two things have always been my thoughts as to what is happening.
We have a sleep study coming up which should be interesting. A will be attached to an eeg, a heart monitor, a sat monitor (with CO2 levels as well) along with probes on his arms and legs for movement. Throughout the night he will be observed for sleep disturbances (they don’t know what they are in for! LOL), oxygen desats and anything else happening. I am also trying to get an impedance probe organized as well to see what reflux issues are occurring at night. I am anticipating that this will show severe sleep apnea along with reflux. So we will just have to wait and see.
Besides yesterday things have been going well. A is the smiley guy I am used to and has actually been doing pretty well with sleeping the past four nights! (Knock on wood!) He does however have a new thing at night where he has this totally make you feel guilty cry if you leave his room. You have to be in his room or else! So I usually just hang out in there cleaning up, hanging his clothes…whatever to make him happy. The minute you walk out the tears come (which as all of you know NEVER happens with A) and he is pouting. So last night I was crawling out of his room so that he wouldn’t see me leave!!!
He also now is starting to understand “kiss” and thinks it is just hilarious!
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Frustrating Doctors, Wonderful Respite Worker, GREAT Implant Tuning, Day 5 Of Hearing Age & My Amazing Little Man In His Pony!!!!
Well it sure has been a few busy days around here! Wednesday was just absolutely stressful and crazy! I must have spent about two full hours on the phone dealing with Toronto Sick Kids and McMaster. I received a call from A’s peds nurse from Sick Kids. She said that she had called over to McMaster because his referral for cardiology cannot be finished until they receive all of the information from Mac with tests and so on that they have done. However they wouldn’t send anything over. I called the health records at Mac and told them who I was and what I needed. She said that I had to write this detailed letter and mail it to them before they would fax over any information. So I then called Sick Kids back and she was VERY frustrated as well. I almost feel like when I call Mac this red flag pops up when I say “A”. So now in all my spare time I have to write this letter requesting the information that I have EVERY right to, for them to fax it to the docs I will be seeing at Sick Kids.
I then received a call from the neurology department at Toronto Sick Kids. Now, I had asked A’s ped here to send a referral there way back in October. I never heard a thing. I then had Ashton’s GI from Mac do a referral a few weeks ago and heard nothing. The referral was sitting there in neurology, however the referral has to come from A’s prior neurologist. Had I not phoned AGAIN I would never have found this out. Why didn’t they call and tell me that I needed the referral to come from Mac?!? Anyhow I then called Mac to tell his neurologist there that I needed a referral to Sick Kids. The nurse told me that it didn’t make sense to her. I won’t go into detail, but I can say after some tears and major frustration the referral was FINALLY done!
Shelly who is A’s new respite worker was here that day (thank God!) and today. She is absolutely AMAZING with him and I am so comfortable with her already. She really takes interest in him and makes him do things on his own too instead of her doing everything for him. He needs someone that is like that because he is so used to just having things done and needs to learn that he CAN do things on his own. (I am talking about toys and things of course.) I have to sit back and smile/laugh because she is not afraid to be a big kid herself. I am very lucky to have found her.
Wednesday A also had a new lady come to see him from CNIB for his vision. When I had spoken to her on the phone I explained his situation with his eyes and said that I was frustrated because I didn’t understand how he reacted the same to things with and without his glasses. Well I don’t think she was really listening to me because when she came she was very shocked to see how well he uses his vision. She said that most kids that she sees don’t see some of the toys that she brought. And the one was this huge circle with colours. Kind of looked like a big lollipop. Man, this kid would probably see it across the street! Anyhow, she gave me a form to call and make an appointment with a doctor in Waterloo. haha just what we need!?
Yesterday grandma, A and I headed down to sick kids again for his implant to be turned up and tuned some more. Ruth was playing a bunch of sounds and you could tell when it went louder that he knew because he started to tense his legs. (We couldn’t hear these beeps as they are played right from the computer to his implant.) After she had all of the sounds and probes set she unhooked him from the computer and told me turn on his implant. I was holding him at the time and the minute I turned it on he jumped! He jumped so much that my mom thought that I had pinched him by accident. He immediately got this HUGE, and I mean HUGE pout on his face! I haven’t seen one that big out of him EVER! He must have had the same face for about two minutes. I was laughing SO hard along with grandma and Ruth and then he started to laugh! It was so nice to see the obvious reaction. Of course I didn’t take my video camera with me because I didn’t think that there would be much to it.
So it seems now that every time that I turn his implant on he smiles. It is obvious every time that he is hearing! I am so excited for him! Last night at grandma and grandpas he had some pouting happening with sounds and toys. Something he has never done before.
There is one more program that Ruth put on the computer of his implant so I will be turning it up probably Monday. We don’t go back to Sick Kids now until August.
Today Shelly was here and Dawn as well. Lucky to have so much help today so I can get all my packing done that I need to! And with A there is TONS to be done!
Anyhow, I will leave this post with some pictures of A in his pony. He isn’t seeming to like it very much because it is hard work for him. Today he was screaming at the top of his lungs so I took him out. Of course then he is fine. What a kid. He is lucky I love him so much!
What a great couple of days it has been around here! Wednesday A had physio and I brought up the Pony to her to see what she would have to say. To my surprise she agreed that A could try it and that it might work for him. She said she loves how I am so into what is good for him and that I want to try things that aren’t even suggested to me. I have my CP mom group and reflux mommies to thank for that!
So Wednesday night daddy and I decided to pull out his exersaucer and try him in it. He has not been in it since Christmas and back then we had to stuff things around him to hold him in and it was just not comfortable. WOW we were shocked how much better he did in it! I am always saying that I never notice much change with him, but this was amazing!!! There was a couple of times that his head would fall back and then he would bounce forward and bang his mouth off the front so daddy decided to use the cushion in front of him. It was definitely a lot of hard work for him!
Now for Thursday! Leanne, the rep that I deal with for A’s equipment came over. She was bringing me the one stander to try again and she had the Pony with her!!! Physio had called her and she was able to grab one for us to try. I was sooo excited! A was just getting up so I got him ready and then we tried him in it. I have to admit that when I saw it right in front of me I wasn’t too sure. There is no place for head support and knowing that A doesn’t have the greatest head control I thought it might have been too much. To our surprise he did great! Leanne said even from what she sees that he did very well. He was even able to move it a few times, but it is going to take much more for him to figure out how and what he is doing. We also found that when we placed our hand behind his head very lightly, that he would push back on it with his head and was then able to move much more efficiently. So Leanne said that she will bring me a headrest and then see how he does then.
Of course when grandma came over to watch A we had to try him in it again!
Grandma and grandpa were here to watch A so that daddy and I could go to the concert we have been waiting for! Uncle S and Andrea came with us too. It was kind of depressing because we ended up completely missing the first two groups (Puddle of Mudd and State of Shock) because there was NO parking anywhere!!! By the time we did park and walk all the way over to the park Chris Daughtry was almost done also. However we did get to see a couple of songs by him.
Then came Nickelback. J and I have seen them once before but they were just as good as last time. They put on an awesome show!
And for the best picture of the night! As we were out around where you buy food and shirts and stuff J said “hey, there’s Lukas!” I was looking around and then saw him. So I hurried over, threw J the camera and asked him if I could get a picture. WOO HOO!
Quick update from today’s appointment at Sick Kids…we saw the ped from there and she was great! Very open to my thoughts and concerns and listened. Some doctors find this task very difficult. Long story short, she is setting up an appointment with respirology, cardiology and neurology. So I guess that is a good start! She also said she would like to do a feeding study. I thought this was an upper GI but she explained the difference and seemed surprised that he has not had one. I also asked for her opinion of fundos and she said it should be an absolute last resort. Thank you, someone that agrees!!!! And a fundo without a feeding study, swallow study and other meds first?!? Anyhow, we are on the same page….that is good enough for me right now.
Well today was the day that we went to London to meet with some new doctors. We met Dr.Jenkins who specializes in movement disorders in children and Dr.Lavine who is a pediatric neurologist. There was also two residents of neurology present. My parents both came along with A, J and I. This last week I have been kind of worrying that the trip would be a waste of time, but it definitely wasn’t! I was very impressed with everyone that was involved and how much they paid attention to A, the information they wanted and how they spoke. In no way did I feel rushed at all or that they were not paying attention. They were very interested in what was happening and with what I had to say.
I have to say that it was actually very difficult for me. I think I am just coming to the realization that A really does have a lot of issues. I can’t really explain it other than the fact that I guess I always hoped that what is happening would stop happening. Today was a wake up call for me and a few times I had to really hold back so that I wouldn’t burst into tears. Especially when I had asked if they thought A would ever sit on his own. That was hard for me to hear that he probably wouldn’t.
So basically, they said that A does have cerebral palsy and displays many signs of dystonia. Dystonia is considered a form of cerebral palsy although it is not very recognized as such. They are going to be sending to get a copy of the MRI that A had in the PICU last February at Mac. They seemed pretty sure that his damage to the brain was caused by the PVL. I told them that I was told that the MRI was “normal” and they think that maybe the docs that read the MRI missed this. PVL stands for periventricular leukomalacia. Periventricular leukomalacia (PVL) is damage and softening of the white matter, the inner part of the brain that transmits information between the nerve cells and the spinal cord as well as from one part of the brain to another.
“periventricular” means around or near the ventricles, the spaces in the brain containing the cerebrospinal fluid
“leuko” means white
“malacia” means softening
PVL is caused by insufficient blood flow to parts of an infant’s brain before birth, at delivery, or after birth. With a baby having PVL, they are at greater risk of developing cerebral palsy.
Dystonia is caused by damage to the basal ganglia as well so that is something else they will be looking at in the MRI. The basal ganglia controls cognition, movement coordination, voluntary movement, the center related to posture and coordinating movements including speech. Damage to this area causes akinesia, the difficulty of starting and stopping movements (involuntary movements), rigidity, tremor, grimacing and fine motor skills.
So they are also going to be calling Sick Kids to see if the MRI group that will be doing one on A soon can just do a full one so that they can see what shows up now. That should be within the next two months. At the end of the appointment they told me that they would be honored to follow A regularly and that he fascinates them. Very touching to me. Dr. Lavine also said that he didn’t want me to walk away thinking that they think less of A because of his problems because he is still human and a great little guy. And I totally agree!
My mind is really not working straight right now to really write how I am feeling. I am a little overwhelmed with today and I feel that things are really starting to hit me. I started to post this blog at about 8pm and it is now just after 11pm. I have been pretty emotional since coming home and am finding it difficult to do this blog. So I apologize but hope there is enough information on here for everyone to understand what went on today and the “diagnosis”.
It’s kind of funny how I feel right now. I have always known that A has and will have issues in life. (I think I have even known before some doctors have.) But I think with everything finally coming out and in the open makes it “real” and much harder to deal with. I would not change a single thing about A and I love him just the way he is, but I just wonder why a child has to go through so much in life. I worry about his future. I just look at him and wonder why such a perfect little boy has to suffer in ways that some of us will never understand.
It is so hard for me to look at him and not feel some sadness. It is the hardest thing to watch your child try and do things that are so simple but yet so difficult when your brain and body don’t work together. It is hard to watch him struggle to try and get his hand to his mouth and get frustrated when it just won’t get there. I can say for certain that it has definitely made me appreciate all of the little things that he does do. I am so proud of A and just hope and pray that he will grow up and be as happy as he is now. I will do everything to make sure that this happens. I am not giving up on my precious little man. I will never give up on him. I will do everything in my power to help him in life and to make him happy. The love that I have for this child is just unbelievable! I just can’t imagine my life without him in it. I think I will end this with a quote that I read tonight while doing a little research.
“All disabled people are impaired, and all handicapped people are disabled but a person can be impaired and not necessarily be disabled, and a person can be disabled without being handicapped.”