Sigh....

* Do you think Maddie likes her new eye patch?

Ok, so this week we went to see Maddie's pediatric eye doctor. We found out that she has V pattern exotropia. This is not the answer just yet for her eyes so don't get too excited. I was initially excited at the fact that perhaps this was the cause to her eye rolling, blinking, photophobia, head aches, and even possibly the balance wobbly issues (ya I have high hopes.) I had asked Dr. Hastings if it was possible that it could be the cause to her problems. She didn't sound too promising but agreed that it MAY be a possibility. She said that MOST kids do not get head aches or have many issues at all with this type of strabismus (exotropia is a type of strabismus.) I explained to her that Maddie IS NOT like MOST kids and has a lot of sensory issues. I was trying to convince her that perhaps Maddie is extremely sensitive to EVERYTHING and maybe...just maybe she is really sensitive to this eye problem and it causes her these issues. She did say that Maddie is getting double vision when she looks up. ...So, how would you look if you had double vision and were VERY sensitive? It is a stretch but I am really hoping that it is sensory.

Dr. Hastings gave us some eye patches to try out. She will call in 2 weeks to see if there are any changes. So far it seems to help for about 30 seconds...then her eye goes out and she tilts her head to look with her eye outward. We will see how it goes.

Maddie is still having a good week. In the last few days she has said some words and that is very encouraging. I am not getting too excited however, as her pattern has been the same for as long as I can remember...good weeks, bad weeks, good weeks, bad...etc. So it is great and I am so happy she is saying a few words again, but I have learned to not get TOO excited just yet. She is saying Uh, Oh again and all du (all done) again. She stopped that for a while. She is also saying qua qua again! Super cute! I got a note from her therapist that she said Ball today! I have been working on this word with her forever.

I do think she knows I get frustrated and gives me a harder time (being stubborn) when I am working on her words. I think this is why I hear little words from her, and am surprised when I hear that she said certain words at school. I guess all kids give their parents a harder time.



Through this whole process with Maddie I have become very close with other parents who's children with some special needs as well. Today I received an email from a friend who is now at a point of acceptance that her child may need some extra support for some of his needs. She wanted to thank me (of all things) for for understanding her denial. She had finally agreed that it was time to ask for some help for her son at school.

I am going to post the response I had (w/out her name or his ;) because I am proud of the transformation I have made through this process. I too was in denial for a long time. I did not understand WHY Maddie was not learning. Why she hated to be touched or looked at, or cuddled. Every time she hit 1 month older I was so depressed at lack of progress. I didn't understand why nothing in the books worked...all the advice the doctors and other's gave...Nothing worked. She didn't sleep, she wouldn't eat, she hated life. I never stopped to think that it was actually ME who wasn't accepting that we couldn't go by the books...If Maddie needs to swing in her baby swing at 16 months old to calm down- so be it. If she can't hold a sippy cup because she fists her left hand we'll give her a straw. If she is obsessed with licking, we will give her ice pops and let her lick.

I have realized that MY control, MY way of teaching her is NEVER going to work...and in fact it was becoming a barrier for her. I needed to accept that. I have now and am proud of this. I now take Maddie's lead, and allow her to show me what SHE is ready for. I felt it was important to share this email response as I am sure ANY parent who has had a child with some special needs can relate to this important process.

Denial...

The process of Denial is a part of the process of Acceptance...

"and I mean accepting that your child is perfect in every way. Perfect does not mean the same for everyone but you know he is perfect that is all that matters. Every child learns/socializes differently and unfortunately society is set up to teach children to learn and socialize a specific way. Your child may need some extra help to do what other people decide is "normal"...But it is OK that your child has some differences in their learning style. That means nothing at the end of the day when he cuddles up to you and says, 'Mommy I love you.' So, you can deny that other people say he is 'special' or you can accept him as special and perfect.

The folks that will be working with him are not there to change him, but to help HIM to use HIS style of learning in a society that learns differently. They teach your child that society is different, not him...and they help give him (and you) the confidence to prove it to others by allowing him to learn in his own special way. The specialists are not only helping your child, they help to teach you and others working with him that your child learns THIS way and WE teach differently. So WE need to change the way WE teach...not visa versa.


I have only learned this through my experiences with Maddie. I have great respect for her workers.THEY have been the ones who have given me the ability to ACCEPT that Maddie is PERFECT and that I need to change the way I was teach her based on HER style of learning. I was/am the one who is different, not her.

*This was the reply email I sent to a friend today about my own experiences with denial.

Is it Possible?

Somehow my latest post dissapeared...It was long but I can not get it back. I will repost when I get some time soon. Here is a video of Maddie's eyes again. Shows that both eyes now go outward...

Here is a video of Maddie's eyes recently.

Normal

* MY doctor sent my results but thought it was a good thing that the result was normal :)

So yesterday I received my Tuberous Sclerosis genetic test results...Normal...This, you would think would be a good thing...Unfortunately this means we are now a 50/50 on Maddie having TS because we are only waiting on Rob's test results. Remember, if his are normal like mine is, Maddie IS likely to have Tuberous Sclerosis. This is because it would not be considered a polymorphism but a spontaneous mutation. So...I am still not getting nervous as I am almost certain it must be from Rob as it would be so incredibly rare if it were a new mutation. That is how the geneticist explained it at least.

So normal is not a good thing in this case. We want one of us to have the same abnormality as Maddie's as this would mean it is benign...because neither Rob or I have any symptoms. I hope this makes sense.

We should receive Rob's results early February...I hope.

Other than all that Maddie's eyes are great again today!

Paige is going to be in Rob's cousin's wedding as a flower girl and we went to try on dresses today. She was so cute! I will update her pictures of her looking in the mirror. She kept saying, "This dwess is so cute!" and she would twirl around like a little princess. Paige goes back to the plastic surgeon tomorrow to check her scar. I think it is healing great so far.

The fit...

*Paige showing Maddie how to stand on a stool

OK...So I have been in an ambulance twice in my life (that I know of) and both times have been with in the last 2 months! Our wonderful, sweet, lovable Madeline has figured out yet one more way to get what she wants.

The other day she was quite crabby and we were trying to make dinner, get drinks etc. Well she wanted to be held and walked around and I just did not have the time at that moment. I sat her down on the other side of the gate and said , "Well you are going to have to throw your fit, sorry Maddie." She cried and screamed and stood up crying. All of a sudden I did not hear her breath in and turned to see her turning purple. I knew she was going to fall but also knew I could not get to her in time. I was very calm as I watched her tip sideways stiff as a board. I heard her smack and then it happened. That is when I freaked...Maddie arched her back stiffly and turned completely blue with a few convulsions. She lunged forward and was convulsing and gargling. This lasted only about a minute and then she began screaming. We knew it was a seizure and had to get her checked. She was VERY tired after it happened and about an hour later after a ton of Tylenol at the hospital, she was completely fine.

Maddie had what is called a Breath Holding Spell/seizure. Ya- there is a name for this crazy behavior. It is not like real seizures as does not cause ANY brain damage. Her pediatrician said it will most likely happen again (and could happen frequently) and there is nothing you can do about it. He said, "have fun!".... He knows Maddie is quite the stink.

The doctors at the hospital could hardly touch her as she screamed if anyone even looked at her. She hates adults that she doesn't know and certainly does not want them touching her! The nurse came in to discharge us and stood on the other side of the room giving the discharge instructions while Maddie watched Dora as a distraction. My poor Mother-in Law (Debbie) came to bring her toys and Maddie would not even touch them until she was on the other side of the room. As soon as Debbie touched her water bowl, Maddie screamed and wanted nothing to do with it anymore. This has been the longest lasting phase that is really difficult to handle with Maddie. It gets really hard when we are in public places and someone says, "Oh, look how cute you are." and Maddie suddenly arches and screams. Or when she is crying and strangers think they are being helpful by saying, "What's the matter sweetie?" and Maddie freaks even more. It is so embarrassing to tell people that she is only crying because they are talking to her. Oh do I hope that passes soon.

Anyway she is fine- just clearly much smarter than we ever thought and can now get her way by holding her breath and having a seizure...

We had another scare just a few days before this as Maddie woke up and could not open her eyes for a few hours. She tried very hard but her lids just did not open. We put her down for a nap and when she woke up she could open them a little and then with in the hour was fine opening them with no problem at all. Something similar has happened once before at the beginning of her photophobia. I always tell her doctor but no one really knows why this is happening so there is nothing that can be done. Her eyes have been pretty good since then though...even after her head bonk and such. She is clearly back to good days and is loving it...for now.

We got a call yesterday that they want us to go back to the TSC clinic in Boston February 19th. This is earlier than we were supposed to go (at the end of March early April). I am hoping they will have our test results by then.

Ahhh...Until then I am going to pad my entire house with foam, lock all the doors, keep the dog away, and make 2 bubbles for my kids to live in...just for a few years...before the next drama in our life occurs :)

The Plague is here!

Maddie at I-Hop

So I knew it would happen...Maddie is obsessed with licking every floor or wall that she sees so I knew she would be getting sick again soon. We were a whopping 6 days of cold free. It started yesterday with that same whoop like cough she had before. No fever just a nasty cough that is only bad at night and naps. She just got over something very similar, and that took 3 weeks to get over! Worst part is she is bringing it back to Paige...Stop licking Maddie!!! I don't know how long this phase lasts but I hate it!
On a positive note, Maddie is really doing a super job with sign language. This child used to scream at the top of her lungs if you even tried to use sign language with her and now she is doing it so much! She can do signs for please, thank-you, more, milk, byebye, eat, yes and no. The yes is new and looks so cute! She is not quite initiating it or doing it until after she hears the word but she is getting there. She really is talking a lot...in her own language :) She acts as though she is reading a book and jibber jabbers away pointing at pictures.

I had Paige out with me the other day and she told this lady that she had a sister...The lady asked if she liked her sister and Paige said, " ya...but she is a stinker." It was really cute. Paige isn't kidding though...Maddie seems to love pushing buttons and trying to get into trouble. She is constantly hitting the dog or throwing things down the stairs, or playing in the dog water...anything to get in trouble. She is a STINKER!!!

I have met a few people on line who's children have this Episodic Ataxia 2. They watched Maddie's videos and said their kids looked similar in their episodes. Oddly enough one of the ladies that I have connected with from England has a daughter who had the same eye problems and muscle spasms Maddie had/has...and to make it even MORE ironic, her name is Sarah Jane also...just spelled differently.

I can not wait until we get an answer on the TSC 1 thing so we can either move on or have a focus. It drives me nuts to not have an actual name for her weirdness. My Mom calls them Maddieisms...She has always called her weird stuff that.

Maddie's eyes are good right now and I am hoping to get some good pics before they go bad again. If I get some I will post a few.

Thanks again for all the support!

Faith...

*Maddie in waiting room yesterday

So....this is one reason I started this blog...the need to vent and share my frustrations along with Maddie's successes. Unfortunately, right now I am frustrated and find myself once again exhausted with information...or I could say lack there of. Ill explain:

First of all we had one hell of a day yesterday as we left for Boston at 3:15am due to my OCD issues and not wanting to sleep on dirty hotel sheets. Burlington got a record 32 inches of snow from this snow storm so I wanted to leave early and get there 1 hour early to get Maddie comfortable with the office since she freaks every time we go. Needless to say, it took over 6 hours to get there because of an accident 30 min out of Peabody and we missed the apt. Luckily Dr. Robbins said he would see Maddie during his lunch so I was relieved after such a long drive.

We waited in the waiting room for a few hours and Maddie was great! Besides licking every corner of the office, floor, walls, other people's coats, she really was super just playing. Her eyes were perfect with only a few episodes here and there of rolling and tearing. I really wanted Dr. Robbins to see her when she had good eyes as he has never seen them good...

Unfortunately as soon as she walked into his office, it was all over. She lost it once again...eyes were bad, rolling, blinking, not looking up. She was a nightmare and he was barely able to look at her. She wouldn't stand and it did not matter what I did. I even brought a lollipop as she never gets these and I thought for sure this would help divert her....nope. Anyway after her episode she almost fell asleep in her stroller so I could talk to the neurologist about some things.

Unfortunately answers we did not get...

Here is what may be a big possibility... Something called Episodic Ataxia type 2 with Paroxysmal Tonic Upgaze...These are 2 different things and can explain more in another post when I have a bit more energy...Bottom line, they don't just know...yet.

I kept hoping he would agree for a 2nd opinion for another pediatric eye doc...But he said he does not agree, and does not think it is an ocular problem but is neurological. He said that sometimes kids get random childhood tics that go away but he is fairly certain there is an underline reason for this and does not believe it is just benign...I found myself having those Ally Mcbeal moments where I jump out of my body, ring his neck and say, "Then figure out what it is already so you can fix it!!!!" I know it is not that simple. I just don't understand why no one has seen this before. He said he HAS seen something similar with diseases (very bad ones) that Maddie has been tested for and DOESN'T have...

I just find myself thinking that it could be as simple as an eye issue...I seriously feel like somehow an eye doctor would have to have seen this before...I guess I am really just hoping and have to have some faith that Maddie will grow up to be as healthy as her best friend and this will all be in the past one day. It just feels so far and these are the times I get so frustrated.

Another part that was rough for me was when I saw another little toddler who was 1 month younger than Maddie. Her doctor came out and sat down with her Mom and I could hear them discussing the toddler getting hearing aids. As the doc and mom were talking, Maddie was looking (and trying to lick) the little girl. The other toddler was pointing at Maddie and saying "baby" "baby" and pointed to the truck and said, "twuck"...Her mother said that the toddler says over 20 words despite her hearing problems! What is so frustrating is that I can not even get Maddie to REPEAT me saying the word ball...or truck...or baby...or...well here it is... I always get so excited about Maddie's progress and then I see her around another child her age and it all kind of kicks reality into gear. Don't get me wrong, Maddie has moved mountains in the last year and I would never say I wasn't proud of her for that. I just get really frustrated when I think about what she can not do...I shouldn't think like that but I do sometimes.

I am not that concerned about her language as she is still quite young. I just go through this frustration sometimes when I see other kids her age doing a lot more. And of course parents always like to brag about what their kids do...as do I...but I never realized how difficult it could be for the other parent to hear the bragging until now. Another life's lesson learned.

Maddie is so happy to be home, but by the time I picked her up from daycare today she had fallen apart and was a wreck. Getting back into routine after being on vacation has not proved to be easy for any of us!

Wiiiiiiiiiiiiiiiiii!!!!!

Hi there! hope everyone had a great New Year! Ours was pretty uneventful...which is a really good thing. Maddie is coming back from a rough week and her eyes seem to be getting better once again. The neurologist that we see on Monday has not seen Maddie when her eyes were good so I am glad they have gotten better.

On another note, after lots of bickering with Rob that I did not think it was good timing, I gave in and bought the Wii that he has been nagging at me about. I have to say as much as I do not want to admit it, it is not just a silly video game...I love the thing! Shhhh...don't tell Rob :) We have only had it for a few days and boy oh boy are we both sore! This thing gives you a great work out! The best part is that the kids like it too...Maddie especially! She is so funny as she tries to imitate us with the bowling and swinging her arms around...it is great! Paige gets into it a little but as soon as she can coordinate the remote, I am sure she will be more excited.

Maddie is doing super developmentally still. She is truly in toddlerville right now trying to do everything that we do or Paige does. She is going right up to Paige to give her hugs and kisses. Unfortunately with in 2 minutes is screaming and hitting her too...We have to work on that. She is LICKING EVERYTHING and it drives me nuts!!! I swear she will end up with the plague or something! She licks the floor, legs, shoes, walls...pretty much everything. I get so grossed out by this. I can not wait until this stage passes. So far in terms of speech, I think she is still struggling a bit but I know it is going to come. It is strange because she will not always say the word duck appropriately, continues to say Quack Quack if you ask what does a duck do (I am psyched that she continued to say this!) She is mumbling Mamama more often and I do love that. Still does not call Paige or the dog anything in particular though. So this is a work in progress...but since the Quack Quack, I see it coming very soon. She really is now understanding much of what we say...Even though it doesn't always process right away, she is getting it.

So I will let you all know how Monday goes. I know a lot of you have had trouble with the comment part and I do not know how to make it easier or fix it. However if you do have a question that doesn't post feel free to email me