This is the page you'll come to when you want to catch up with everything that has been going on with me!
We have a so many things to tell everyone!We have been busy as usual.We have had lots of appointments.
On the bright side I seem to finally be getting used to my Ultrasounds!!Yay!! I did awesome on my latest one not one tear from me or Mama.I also had my 2nd EEG to check for any possible seizures.Mama has noticed that over the last few months I jerk my leg when I fall asleep and was concerned.It came out fine.Mama is going to post the pics of me all hooked up to the machine.
Over the last few months I have developed big veins on different parts of my body.I have always had a big bulging vein on my left leg( with the PWS) but I recently developed one on my arm.It hurt and I held my arm up and wouldn't move it for a whole day.Mama took me to the Dr. She said I might have had a blood clot and that we need to test for that but we would do it after the MRI.Now that the MRI has been done we hope to have the testing for the clots done as soon as possible.I also now have big veins next to my temples and two more next to the one on my left leg.
This summer we got my 2nd MRI & MRA done.My Dr. can now say I do in fact have Chiari Malformation.Also my brain has continued to grow on the right increasing my Hemimegalencephaly.So we have to continue to look out for those pesky seizures and I now have to see a Neurosurgeon.Mama sure is nervous about that.We see him in a week.
This summer we went to Maryland to attend the CMTC Conference.We were so happy to be able to attend.Thank you so much to all of those who helped with the Bake Sales and Raffle Fundraisers!!!You were all so great and we really appreciate it!The Dr. we met at the conference doesn't think I have CMTC but we were happy to get to see other kids who looked like me.It meant so much to Mama and I'm sure when I'm older I'm going to enjoy that part of the conference as well.Eventhough I do not have CMTC we plan on attending next year so that we can continue to learn as much as we can about all the different conditions and to continue to grow great friendships! Another great thing that happened this summer is that I finally received my shoes with the lift!We waited for months but they finally came and they are so cool.I'm going to have Mama put a picture of them up so you guys can see them.The left one has a lift and they both have arch support inserts in them.I have to wear them from morning to night but if it helps we'll do it! I have also started using my words more!Yippee!! I am putting words together for sentences.Not all of my words are clear but we are working on getting me to express myself.This is especially important because some of these health issues cause physical pain,Mama wants to make sure I can express myself and my pain so she can get me help when necessary.
Lastly but defintely not least we may be closer to getting a diagnosis!On a recent check up with one of my Dr.'s,he diagnosed me with Macrocephaly Capillary Malformation also known as M-CM.Luckily my Mama had already heard of this condition from a mom on our support group.She had brought this up a few months ago and was kind enough to share a study done on M-CM and the Specialists email address with Mama.As soon as our Dr. mentioned this we were able to make contact with and work towards a meeting with the Specialist.M-CM is a rare and serious condition which carries with it alot of issues.We will be taking a trip to Michigan in November to see if he agrees with the diagnosis.We will let you know what we find out!
Thanks to all of you who visit and check up on the site and thanks to all of you who have donated!!And a very big thank you to all who helped with the fundraisers it has meant so much to Mama and me to see you all come together to help me!
So many things have happened in a month!!We have been planning a trip to Michigan.That has been taking alot of Mama's time.She is trying to figure how best to do this.She found a wonderful Charity called Angel Flights, they provide free air transportation to children with medical issues who need treatment or who need to meet with a specialist.After getting everything in order with this organization one of my DR's stated that he did not think it was wise for me to travel on these small passenger planes because of my Chiari Malformation.He thinks it might have some negative effects on me.So back to the drawing board!Mama is now working with a different charity that provides air transportion for a small donation amount, called Miracle Flights for Kids.We would not be able to make this trip without help because it is right before Thanksgiving and the airfare is super expensive and with all the Dr's bills Mama can't keep up.Things are starting to come together regarding the trip.Thank Goodness! We'll keep you updated.
I got really sick this month!!!I was a little sick with a cold and it was no big deal.After a couple of days I seemed to be getting better till one night when we got home & I started acting funny.I couldn't sit up straight and kept tilting over and wanted to be carried.I told Mama my leg hurt but she didn't see anything wrong with it.Mama put me to bed but I didn't sleep long!I woke up burning up with fever.Again I was a little loopy and not really able to pay attention to Mama or hold myself up.I also couldn't hold my pee pee and had a few accidents.My Mama checked me out and saw nothing wrong so she gave me some medicine and stayed up with me till I felt better and was able to put me to sleep.As soon as the Dr's office opened Mama made an appointment for me.She went to work and I stayed with Grandma.Mama met us at the DR.'s office, as soon as she got there she noticed that I couldn't walk, I had to be carried.She looked at my leg and it was red and swollen from my foot to a little above my ankle.It was my left leg ,which is my smaller leg and also where I have the Capillary Malformation.When my DR. saw me he couldn't believe it,my smaller leg was as big as my big leg and it was so RED, it was bad!!!Mama said it looked as if it was screaming at us.I had cellulitis.He said we had to be admitted to the hospital but that we should first see the Orthopedist to have an x-ray to make sure the infection didn't get into my bone.Thank goodness it hadn't.We were admitted right away and an order was put in for antibiotics,oral and through I.V. I was a mess so sad, so sick, so upset.Since the top part of me is so small(Atrophy) it is super hard to get my veins.It took forever to get the I.V. in and to get the blood.Mama was a big mess too!!!!She was so scared and upset.The infection continued to spread for two days it went all the way up to my thigh.We were in the hospital for 8 long days.I had alot of tests done but everything turned out o.k. in the end.The antibiotics worked their magic and I was sent home.It seems I developed the cellulitis from a crack on the sole of my foot that then became a cut.I have been getting the cracks ever since I got my special shoes.Poor Kassie(my big sis)had to spend her 7th b-day in the hospital.Mama tried to make it up to her by decorating my hospital room for her.Hopefully that won't happen again!We are so grateful to those who came to visit and tried to put a smile on our faces.Hugs and kisses to you.
We're getting ready for Halloween.I'm going to be a pirate!Hope you get lots of candy.
We were able to make the trip to Michigan.We met the Specialist on M-CM.We went to see if he thought I might have M-CM since this summer one of my Dr's stated he thought this was the correct diagnosis for me.That was never one of our original options as a diagnosis for me but my Dr. said that now that I am older things are more clear and he really thought this was the correct diagnosis. Mama figured no matter what we had to do to get there we were going to Michigan to find out for sure!
Mama contacted the wonderful charity called Miracle Flights for Kids(you can find the link to their page on the links page).For a small donation amount they help children with medical needs get plane tickets to see Doctors that may be able to help them and to get Treatment.They got tickets for me and Mama, we are so THANKFUL for their help!!We stayed at the Ronald McDonald House while there.It was a very new and different experience for us.Another wonderful organization!!I had a blast playing in the toy room!Mama was so relieved to have them to turn to when she had no other way to make the trip happen.
The Dr. and his staff were great, so very nice to us.They seemed a little shocked that we came from NY to them but Mama felt it completly neccesary.After examining me he came to the conclusion that I do not have M-CM.He thinks I have a completly different syndrome,another that has never been mentioned as an option to us.He thinks I may have C.L.O.V.E.He said he would contact the NIH on our behalf and see if they will meet with us.They are the experts on C.L.O.V.E,they delineated it from Proteus Syndrome.So what we are hoping for now is that the NIH will want to meet with me and maybe we will be closer to a diagnosis!!Even if they say I do not have C.L.O.V.E it'll be good to meet with them because it appears that we are getting closer to a diagnosis by process of elimination.He also said it is very possible that I have my own Syndrome!!!Maybe that is why we have had no luck in being diagnosed in almost 3 yrs,wow who would've thought!
Mama and I want to take a moment to say how awesome we think my big sister Kassie is!!In November Kassie ran in the Ronald McDonald Fun Run to help raise money for the organization.She said that since we were going to stay with them when we went to Michigan she wanted to make sure the one here has money and supplies to take in families who need the help.In December Kassie cut off 8 inches of her hair and donated it so they can make wigs for children with Cancer.She is so kind and generous! We love you Kassie thanks for all you do for us and to help others!!!
Happy Holidays to you all!Well another month has gone by and we just wanted to catch you up on what has been goin on.My Early Intervention Case has been closed.They made so many terrible mistakes.I was left with No TSHH the whole time and my PT left in Aug. and was never replaced.Mama called and called and kept getting ignored or the runaround.Finally someone took charge of the case and suggested we were better off closing the case and opening a Preschool Case since I'm almost 3.I have just gone through all of the evaluations.It seems like I will finally be getting Speech Therapy,which Mama has been fighting for since I was 11/2!!It also seems like I will get OT and PT.We'll know for sure once all of the reports are in and we have our meeting.Hopefully this will be good for me!!Mama only wishes it had started long ago she doesn't want me to be behind my classmates.I am putting words together though.Mama is so proud I can finally say I love you, which makes her very happy!!Mama says if she had to describe me she would say I am super affectionate and super fiesty!I get mad sometimes,really mad but maybe it's just because I don't know how to express myself.Maybe the SpeechThreapy will help with this.
After leaving the hospital in Oct.Mama has taken extra special care of my feet to avoid getting anymore cracks/cuts and another case of cellulitis.It has worked till recently.All of a sudden my feet are cracking and getting cuts again.It has Mama very nervous for me.We have sent in the inserts back to the Orthotist to be covered in leather.Maybe I am having a reaction to the foam it is made out of.We are also using Lotrimin in case I have fungal infection which is what is causing the cracks rather than the shoe inserts.She also puts alot of vaselin on before my socks to keep the skin soft so it won't crack.If someone out there has heard of something like this before or experienced something similar please let us know what has helped you!!We welcome any and all advice.We are learning as we go along and there is so much we don't know!
We still have not heard from the NIH but hope to soon, if not then we will go to Boston to the Children's Hospital and see if they can help.
We wish you all a wonderful New Year filled with much Health,Peace and Happiness!!
Hi Everyone! January was a busy month for us and we wanted to let you know everything that has happened!It all actually started in Dec.On Christmas Day I told Mama my cheek hurt.I said it almost everyday for a month.Mama gave me medicine to take away the pain but it didn't really work.By New Years Mama was very worried about me because I was constantly rubbing my cheek & touching my mouth complaining about pain.The Dr we saw that day didn't see anything wrong with me.After two days Mama took me back to the Dr still nothing.Within a couple of days the pain was very bad and I screamed and screamed.Mama rushed me to the ER.They said I must be suffering from an ear infection but it was hard to tell because my tubes were out and in the ear canal.They told Mama to take me to the ENT the next day.At the ENT they said my ears were perfect!They pulled out the tubes and even did a scope up my nose and down my throat looking for what might be causing this pain.They found nothing!!Mama was told to return to Pediatrician again.This was our fourth time there regarding this pain in my cheek.Mama wasn't really sure if the pain was in my mouth,cheek, ear or head because I wasn't able to tell her but I was always holding the cheek.The Dr we saw was not our regular Pediatrician (he was away for the whole month Mama was so upset about this)I was sick of Dr's by this time & I couldn't stand them looking at me let alone touch me.It was a difficult time to say the least.I was sent to have an x-ray of my jaw and told to visit my Neurologist in case it might be a nerve issue causing all of this.The x-ray showed nothing but mostly because I screamed so much that the pictures were not useful.We went to the Dentist and he said I was fine.According to him the pain had nothing to do with my teeth.
When we met with the Neurologist he suggested it might be a pinched or exposed or dead nerve causing me this pain.Something similar to Trigeminal Neuralgia, this was a scary thought for my Mama but she knew my pain was real and told the Dr she was ok with whatever they had to do to figure it out.He said we might have to do an MRI.
Before the MRI could be ordered an abcess formed on my gum.Mama returned to the Pediatrician (finally mine was back from his trip)!Of course he was very proud of himself when he declared the cause of all my pain was an infected tooth and that is why I developed an abcess.My Mama said "No Way!!"How could I have been in pain for a month because of an infected tooth?Why did it take so long for an abcess to form?It had to be a seperate problem she thought.She had taken me to the Dentist in case it was a tooth thing 2 weeks before and he said I was fine.We went back to the Dentist this time he said I had a cracked tooth & an infection.I was put on antibiotics.We were then sent to an oral surgeon, he took x-rays and found that my tooth was indeed infected and would have to be pulled.All of my DR's discussed it and agreed it had to be done.My tooth was huge!!My Mama couldn't believe it came from me.If my baby tooth is that big then what are my adult teeth going to be like?How will they all fit?Mama is worried about this!
Mama is still not convinced that the pain was caused by that tooth but all of the Dr's are.They said because it was from my hemi side that is why I felt the pain so badly.I still touch my cheek every now and then but my Pediatrician thinks it is because I did it for so long.Right now we are hopeful all of that is behind us.It was so hard to be in so much pain and feeling terrible for so long.I was on a high dose of Motrin every 6 hrs rather than every 8 and it wasn't even lasting long enough, that's how bad it was!I'm glad it's done!
Mama recieved the letter to attend her meeting to see if I will be approved for Services such as Speech and PT.Cross your fingers that I get it!We hope your year is off to a great start!
I want to start off by saying I'm 3!!!!Yay for me!!
If we thought January was crazy it was nothing compared to this month!!!I am talking so much now!Mama is so proud,everyone is. I'm using so many words and speaking in sentences, I'm proud of myself too.Another good thing that has happened is that Mama went to the meeting and found out I was approved for services.The only problem is that they have no one available to provide the services.The only service we can start is the SEIT.In March she will come and spend time with me in school.The other services cannot start until they locate someone who can come and see me at school.Hopefully it won't take too much longer.
We want to share with you all what has made Feb such a difficult month.The day after my birthday some strange things started happening to me.As we were getting ready to leave an appointment I got quiet and just started moaning.I had been fine the whole morning before.All I wanted was for Mama to carry me.Mama took a cab to work since I was acting funny.I acted the same way the whole ride.Once we got out of the car and into school Mama noticed how not ok I was.I was very pale,limp & I couldn't keep my eyes open.I kept trying to close them as if to go sleep but I had only been up a couple of hrs.Mama got very nervous, very quickly!She knew something was not right.Our friend Connie tried to help us but nothing she or Mama did worked.Mama kept trying to keep me up and was calling my name and patting my cheek but I continued to close my eyes and not respond at all.Mama tried to put me down to walk and my legs buckled.She called the pediatrician(of course mine was not in) the Dr that was there said to hurry in.As soon as Mama picked me up to leave I vomited.Mama ran the couple of blocks to the Dr's office.I was still quiet when we got there but I had a little color back in my cheeks.All of the nurses were very worried about me.I did not look ok.By the time the Dr saw me I had started talking a little.She said she thought I had a stomach bug!Mama did not believe this to be true but the Dr went on to say that a terrible stomach bug was going around.Mama thought this didn't sound right but was hoping it was something as simple as a stomach bug. As soon as we left the office the same thing happened again.Too bad the Dr. missed it!By the time we got home I was ok.As if nothing had ever happened. I was eating and drinking fine and not vomiting.Mama knew I did not have a stomach bug!Luckily in Feb I see all of my Dr's so we didn't have to wait long before we got to see a different Dr. and tell them what happened.
The following day I had two appointments.Once Mama explained what had happened the day before to my Vascular Dr. she said I should have an EEG and that Mama should call the Neurologist right away and let him know about my "episodes".As soon as we left her office Mama called the Neurologist and left him a message describing the "episodes". The next appointment was with my regular Pediatrcian for my 3 yr check up. Mama told him what happened and what the Vascular Dr suggested.He agreed with her that they were "episodes" not a stomach bug and that the Neurologist had to be involved.He called him and they discussed it.The three Dr's came up with a game plan.They wanted to wk on this quickly.That made Mama happy and nervous!
A Brain MRI and an EEG were ordered for early the next week.All of this happened on a Thursday.I was sedated an intubated for the Brain MRI.Eventhough this was my 4th MRI Mama was a nervous wreck the whole time.She just hoped it would all be ok.She hoped the test would show nothing but she knew those "episodes" meant something.The thought was that it might be my Chiari Malformation causing me trouble.If that was true I would probably need brain surgery.Too scary to think about for Mama.I had the EEG the day after the MRI busy week for me and very upsetting for both me and Mama.The MRI showed no change from the one done in July.That was a good thing but then what had caused those episodes?Mama was so nervous waiting everyday to see if it would happen again and hoping it wouldn't.The results of the EEG were not in yet.My Dr gave Mama instructions as to what to do in case the "episodes" happened again.If his office was closed she was to take me to ER and tell them to do CAT SCAN.She was to check my pulse and my pupils.Mama was a wreck and just prayed it would never happen again.But it did.
Exactly two weeks after the 1st two "episodes" Mama heard me crying.She checked on me but thought I was having a nightmare because I was asleep.Twice more I cried and she checked on me she saw nothing wrong.Then I screamed!Mama came running.I sat up and vomited then I laid back down and didn't move a muscle.Mama didn't put things together yet.She came by my bed to pick me up and noticed how still I had stayed.She turned on the light and noticed how pale I was.I looked just like two weeks ago.I had just had another "episode".While Mama was carrying me I had another "episode".I was super pale, limp,unresponsive and kept trying to close my eyes.Unfortuantly Mama had to go to work.She took me with her and kept me with her.While there I had a third "episode".It was so scary!I got pale,threw my head back, tried to close my eyes,was unresponsive and then vomited.When we left school we went straight to my Ped.He sent me for an EKG which came back normal.My Ped,who was worried about what might be going on,had me admitted to the hospital for one night of observation in hopes of seeing one of these "episodes".They needed clues to figure what was going on.They thought it was probably my brain or my heart but not sure which or if either.After one night and one day I was transferred to the hospital where I was born.They really felt this had to do with my brain and my Neurolgist is with that hospital.He wanted me to have a 72 hr Video EEG there, but there was a waitlist.The only way to get it done immediatly was to transfer me and make me their patient.I had my 1st ride in an ambulance.Mama and I are hoping I will never need another!!
At the new hospital I was hooked up to a Video EEG 24/7 for three days.No one had news for Mama.On the third day my Neurologist called Mama and informed her that I had been having small seizures all weekend long!!What a shock.Mama cried and cried!!The only signs of seizures on the video was the foot twitching Mama had been describing to Dr's for about a yr! My feet and legs twitch as soon as I fall asleep everyday.The graph picked up the brain waves proving I was having seizures.Now we knew what was going on.Now how do we deal with it?
We always knew I was at a higher risk of developing seizures because of my Hemimegalcenphlay but of course we were hoping it wouldn't happen.We started anti seizure medication that night.I was kept an extra day to watch how I did on the medicine.It is called Keppra and I have to start on a very tiny dose and work my way up to the correct amount.Mama was asked to keep an eye out for side effects. We were happy to finally leave the hospital.What was supposed to be one night of observation and had turned into six!Mama increased the medicine as directed by my Neurologist.She reported that I was already showing signs of the side effects.The medicine can make you moody and sad.I was very sad and all my emotions were very exaggerated.The second night we were home I had a seizure!Although they knew I was having them I had never shown any physical signs of them other than foot twitches but I did now.Mama was so scared.I was jerking my whole body:legs and arms up and down, in and out & I was clicking my tongue.Very scary!Luckily I slept through it.Mama spoke with the Neurologist and let him know.He upped my dose of KEPPRA.The next night the same thing happened.Mama met with my Neurologist.We now have a game plan.If one of the seizures I am now having lasts more than 5min Mama is supposed to give me a dose of Diastat and call 911!The Dr is upping the medicine up faster than usual hoping it will control the seizures I am now having.I have had one every night since I have been home.He is not sure why I am all of a sudden having these kinds of seizures.It could be the medicine or it could just be the natural progression of my seizures.If they don't get better in two days than we are changing to a different medication.
Mama has had to take a leave of absence from her job.Because of these seizures and the side effects of the KEPPRA she doesn't feel comfortable leaving me with someone else.She wants to be with me in case something happens.Hopefully nothing bad will! I cannot return to school yet.I miss my friends and Teachers!We hope the medication starts to work soon.We also hope the vitamin b6 I'm taking will help with the side effects.Mama hates to see me so sad.I have high highs and low lows.I'm too young for this kind of thing!!
We will let you know how things go from here.We thank those of you who visited and sent good wishes while I was in the hospital and who helped take care of Kassie!!It means so much to us to have you great, loving,supporting people around us!!!!!!!!Let's hope these seizures get better soon.
Hi everyone!We have spent this month at home and at appointments.
I did not have anymore of those big seizures once Keppra was increased but I did develop a sleep disorder.We don't know if it is because of the stress that I have been under or if it is the medication.The neurologist doesn't want to change the Keppra since it is now working.Shortly after falling asleep I start twitching and jerking my legs arms and sometimes have full body twitches.Mama thought they were nocturnal seizures.She started keeping notes of everything that she was seeing and videotaping them too.She was so scared I seemed to be suffering and that made her sad and she was worrying tons.At this time the movements were very violent and I was crying out during them.Mama has been sleeping on the chair to watch me all night she also purchased a video baby monitor to make sure she isn't missing something happening to me.
After speaking with the Neurologist it was decided that I had to return to the hospital for another video EEG to see if these were indeed seizures.I was there for one night and did all of my usual twitching,jerking and crying out.Mama was told these were not seizures.This is when the Dr's agreed that I had a sleep disorder.We do not know which sleep disorder I have yet or why I have it.
My neurologist suggested I start taking Meltonin.This did not help.He then suggested I take Gabapentin in hopes that I would be able to have a restful sleep because he is worried the lack of sleep will cause seizures.At this time I was up all night moving around and crying out and not going into deep sleep till about 5 or 6 am.It was hard on me and Mama,noone was getting any rest!!The Gabapentin did help to reduce the movements.They were to a smaller,calmer degree than before but they were still there.We have to wait and see if it works.Mama and I have been unable to return to school/work because of the lack of sleep and the stress and just still not being quite right.Maybe we can return next month and things can start getting back to normal.Mama is hoping to return to work in April if I am ok.There is no way she can afford to stay home much longer!I will be meeting my SEIT next week.How exciting, we can start working together.I have been talking tons while here at home with Mama.The one on one has obviously been a big help.Mama is looking into putting me in a gym that provides the other services I am in need of and approved for.First we have to figure when she & I will be returning to work/school and what our schedule will be like.We know that we will be starting off Part Time in order to ease me back into the routine.Hopefully soon we will have the answers we need to make these choices.We are all very tired and sad right now.
Hi Guys!It's been so long!Mama is so sorry she hasn't been able to write till now!!It has been a crazy couple of months but that's normal here right?
We returned back to school/work in April and that is part of the reason why we haven't written in so long, we were super busy.We went back part time we were only going 3 days a week for 15 hrs total but it felt like a lot more.It was alot to do when we weren't sleeping right and just had so much to do.
I started my ot,pt and speech at a sensory gym.I love it there!!Mama is happy to see me having some fun again!The b6 works but not always.There are days I have mood swings but thankfully it's nothing like before where I would cry for hours(really for hours)without stopping or being so mad that I was throwing things and smacking people.We never know when one will strike.Mama is trying to learn the signs of one coming on,she has gotten better at it and at stopping them before they get too bad.I have stopped taking the Gabapentin because it just made me way too hyper before bed.It was taking hours to go down and then I would still twitch and jerk at night.We decided it wasn't worth taking another seizure medication and it not resolving the issue.I am doing better now.I go to sleep at a better time and the twiching and jerking continues but it doesn't wake me up as often anymore and I don't wake up screaming.
In May I had another tooth pulled!!I had been going through the same kind of pain as in Dec/Jan.It was on my hemi side again right next to the first one they pulled.This time they sedated me completly.Since I'm older now I'm really scared of the Dentist and don't want them anywhere near me!But they took it out and thankfully I'm not in pain anymore!!I also had a sonogram of my small leg because of my big vein.My Dermatologist suggested I start using a compression stocking to avoid blood clots.My Vascular Dr doesn't agree so right now I am not using one.Just a few days ago I had a few blood test done to check for signs of blood clots.We are waiting for results.I had my abdominal sonogram today and all was good!YAY!
Since about June I have been walking on my tiptoes.Then in July I started pooping on myself.My Mama spoke with the Pediatrician about it and was told to tell the Neurologist because it seems Neurological.I had a short EEG done and it came back normal.My Mama is still concerned because it has not resolved.She doesn't know what else to do she doesn't want me back in diapers,she thinks it will confuse me and make things worse.
In Sept I will be measured for my new shoes.My LLD is still 1/2 inch.My Ortho told us that next year we should start seeing his partner because he will be the one operating if it I need it.Starting at age 5 they will start doing CAT scans often to track the growth.My Vascular Dr said that she is diagnosing me with C.L.OV.E.S. Maybe you remember that in Nov we met Dr.Conway, he suggested I might have C.L.OV.E.S.Since then my Dr's here have agreed that they too think it may be C.L.OV.E.S but she was the first to officially diagnose him with it the other day.Before seeing her we were planning on going to Boston in Sept or Oct to see if they could confirm one way or the other between C.L.O.VE.S. &K.T. but we had to postpone the trip.
We have to wait to take the trip because Mama has been let go from her job.At first they said she could wait till Sept to become F/T again but then one day they said she had to do it(become F/T) by the next day.Mama didn't feel that either of us were ready to be at school/work F/T yet.And so she was fired in mid July.Another curve ball!!What to do now?!It's been pretty hard on us.She really misses her coworkers and most of all the kids she took care of for all those years and I miss my Teachers and class mates so much!!!Mama had to take Kassie out of camp and swim class and we are just trying to be ok.
Mickey Mouse is still my best friend!And of course the Little Einsteins-they are awesome!I know all of my colors and shapes.I'm learning my numbers and having fun playing with my friends(therapists)to learn more things.Since Mama no longer works at the school I no longer go there.She is currently looking for a new school for me but it isn't easy since its August and because she can't afford the tuition.Hopefully we can find one soon so i can go and play with kids my age.Mama is practicing some things she read in a book about children with Sensory issues.I love to jump and spin around and now that she knows its good for me to do it and that it makes me feel good she lets me do it as much as I want!She also gives me big tight bear hugs and deep pressure massages, those help too.I have also been to the Beach and sprinklers this Summer.I love the water and it is so good for my leg!!
Hi everyone!Guess what I'm in school!YAY!Mama found a new school for me and she and I are both so happy.Mama was a little worried because there were sooo many new things to get used to that she thought I would have a difficult time adjusting but I didn't!I have 2 new SEIT's now.I really like them and they are with me for 20hrs a week so the whole time I am in school.I have 2 new Teachers at the school and I also had all new therapists at the sensory gym,my sessions are now longer too.All together it was 7 new adults in my life but I really did a good job of accepting them.
The blood tests that I told you about last month showed something a little off.My Pediatrician wants my Vascular Dr. to be the one to tell us what to do if anything based on the results since she ordered the tests and it is her area of expertise.But we have not heard back from her either way about it and my Mama is upset!She calls and emails the Dr and nothing...so time for a new Dr.
I have been in alot pain on the top part of my body where I am smaller.I complain every time Mama tries to hold my hand or lead me by putting her hands on my back/shoulder.She asked the Pediatrician if it could be because of the atrophy and not having much muscle or fat on my torso and he said it could be.I'm doing better now but the last week of August till Mid Sept it was daily pain.
I have stopped pooping on myself.We never did find out why that was happening,which is too bad.Mama really believed something was going on...possible seizures?She knows it wasn't laziness because I was doing it in my sleep and there were times I was telling her and then these random times when I just wasn't.Hopefully it won't happen again!
Wow has it really been 7 months since Mama caught you all up??!!Shame on Mama!It has been a crazy hectic time and everytime she says she is going to sit at the computer and let you all know what has been happening something else happens and she doesn't get to.The days turn into weeks so quickly and then before you know it months have flown by!!I am 4 years old now!!A very big boy.I go to school and to the sensory gym where I get to have lots of fun.I like to play and fight with Kassie but am also finally getting to know and wanting to play with my peers at school.For a very long time I only called the adults my friends and would only speak or play with them.But after a few months and with help from my SEITS and time I am more comfortable with the other children and I talk to them a little now and also play with them sometimes.Which is very exciting.
In the past several months there were times when it looked like I might be having abscence seizures but we never knew for sure. There were so many different little things that those around me were noticing that in January I was scheduled for a VEEG.The day before I was to be admitted to hospital for this I went to my therapy at the sensory gym and had a very "weird"episode.It was just like those "episodes"I had last year in Feb!I turned very pale,couldn't talk or move and it just got worse as time passed.The only difference was that I'm older and so when it first started I was able to tell Mama that I felt sick.Mama called the Pediatrician and he said for me to come right over but we were 33 blocks away.While in the cab I closed my eyes Mama didn't know if I passed out or fell asleep.She tried to wake me.When I did wake I began vomiting and then my whole body tensed up and I stood from the siting position I was in.A few minutes after vomiting I began to get the color back and was able to start taking.By the time the Pediatrician saw me I was much better. So again just like last year no Doctor got to see me during it and so they have no idea what it is!The whole thing lasted over 30 minutes.Mama doesn't think that is normal and she wants to find out what is happening.Since I was being admitted the next day the hospital decided to keep me for longer than originally planned.They even weaned me off my Keppra to see if a seizure could be provoked.Although I was there for several days no seizures were noted.I went to see my Cardiologist and he said my heart is fine and so doesn't think this is heart related.My Pediatrician said its possible that it is a syncope(fainting) condition but that I am too young to do the tilt table test that would confirm it.Because the episode took place at the gym my activities were restricted I have only just recently been able to do all of my favorite things again.If it is to happen again Mama is to call 911.She was given a blood sugar meter to test me during the episode and also had to purchase a blood oxygen and heart rate monitor to use during an episode to see if knowing this kind of info can help us finally figure out what they are!
In March I had a stomach virus but the day after Mama noticed that I was having a hard time speaking.I was stuttering.This was new.She thought it might be because I wasn't feeling well but once I was better it continued.Then I got strep throat and I started walking funny,kind of lopsidied!We had no idea what was going on!!I was sent for a Brain MRI,I was due for my yearly anyway.They checked to see if my Chiari had progressed.It had not.Then I beagn pooping and wetting myself.Again we were all puzzled.It was happening several times a day every day!Mama had to put me back in pull-ups eventhough I have been potty trained for years.She was frustrated I was frustrated.It has not been easy.Mama took me to a new Neurologist.A Spine MRI was ordered to rule out a syrinx caused by the Chiari or a thethered cord.I had neither.Mama is sooo glad that I do not have any of these things but so worried because no one seems to know what is causing all of these new issues.It has been suggested that I see a Developmental Pediatrician but they are very hard to get an appointment with!!!!!There are many who do not take insurance and the one we found who does can't see me till next year!My Pediatrician called her on our behalf and she has agreed to move the appointment up.I will be meeting her in July.
In August we will be going to Boston!There is a CL.O.V.E.S get together planned.I will also be seen at the Childrens hospital and we will see if I will finally be diagnosed with either C.L.O.V.E.S or K.T. or maybe something else.We are really looking forward to this.Please take a minute and check out the C.L.OV.E.S. website(the link is on the link page).You can learn alot of about the condition and see pics of lots of great kids who have it. We have also hear back from the NIH they would like to review Nicholas' scans and pictures again to see if they think it is C.L.OV.E.S.
It's almost Halloween!!!We love Halloween.I can't wait to wear my costume and see Mama all dressed up,she is going to be Minnnie Mouse and you all know how much I love Disney things.It is also almost Kassie's birthday-she is going to be 8 in a few days.HAPPY BIRTHDAY KASSIE-I LOVE YOU!!
I just had a blood test done that showed that the level of seizure med is low.My Neurologist asked Mama to increase the dose.I immediatly started back with the mood swings.I was hitting,kicking,biting and yelling.If I wasn't angry I was sad and crying for the smallest little thing or I would sit alone and say "I'm sad"!Mama spoke with the Neurologist she hates to see me this way.We brought the dose back to original amount.We are going to bring it up at a slower rate and see what happens.I will need another blood test in a few weeks to retest the levels.I will also be having my afp blood test and abdomen sono soon.Wish me luck!
Last night I had an "episode".It really reminded my mom of what happened in February(the "episodes I was having then that we think may have been seizures and what let us find out I was having seizures).I was asleep and started tossing and turning and whining/complaining as if in pain.Mama got up to check on me and I was not really awake or really asleep.She kept asking what was wrong or if I was in pain.I wasn't able to answer her and I wet myself.When she picked me up to check on me she noticed that I was very pale.I still wasn't able to talk or really stand so she sat me down.I fell right back to sleep.The only difference between yesterday and what happened in Feb is that in Feb I would also throw up and it lasted a little longer.Mama has contacted the Neurologist to ask his opinion.Maybe it had to do with the change in medication,we will see what he says.The same thing actually also happened the last week of Aug.I was sleeping then was tossing and turning crying out and wet myself.When Mama went to get me and stood me up I had a full body shake and wet myself again.I could hardly talk or walk and fell back to sleep.
The sensory gym is one of my favorite places ever!!I have so much fun and it soooo good for me too!I jump and crash and roll and swing.I have become tolerant of alot of things I wouldn't do when I first started there!At home Mama lets me jump on the couch and push up against her so I feel that deep pressure that makes me feel good.She still gives me big bear hugs and squeezes my legs and massages them for me and that all feels good to me too.When I feel good I am better able to focus on the things I need to do and I am happier.
Mama has added links to the C.L.OV.E.S website and the M-CM website.They are both great, informative sites that will help you get a better understanding of each of the these syndromes and we think you should check them out!!We have recently been put in contact with a Dr. from Boston Children's Hospital,maybe they can verify if I have C.L.OV.E.S we will of course keep you updated!Mama has added some pictures of my body so that you can see some of the things we talk to you about like my feet and vein and lipomas.