Monday, September 27, 2010

Good News All Around Today

Kailyn seems to be doing really well in school.  Her teacher said that she was a nice girl. She consistently comes home with 3's and 4's on her papers (A's and A+'s), except for spelling, but she has excepted that it is not her strong subject and she will do her best and feel good about that.  She will start Chorus and Cheer Leading within the week. Soccer did not work out, but it was not surprising. She is going to try and earn her "bribe" in other ways. ;)  We went to the Endocrinologist early last week and her A1C was good.  The staff was surprised that we were doing so well considering everything else that was going on.

I have spoken to both the Kindercamp staff and Sam's Kindergarten teacher about Sam.  Both say that they enjoy him and he is doing really well. Just a little loud (we knew that one already ;))  Sam is receiving Reading and Math Title 1 services during regular Kindergarten. We fully expected he would qualify for this.  This is not Special Education, so he is still considered to be going to Kindergarten without any supports. Hearing the info about his behavior today made me feel really good.  He lets me know about the kids that do have poor behavior though. lol A far cry from what we thought would happen 3 years ago.

After calls to the Epilepsy specialist in Boston pleading for an appointment earlier we secured an appointment for 2 weeks from now.  This is so much better than waiting 1 1/2 months.  Her med increases don't seem to do much, but make her tired. Her Neurologist here is nice, but he does not specialize in Epilepsy and is too slow to respond. He also seems to be doing some things backwards.  I expect nothing less than prompt, truly committed service when it comes to dealing with my child's brain and development. With blood sweat and tears (a little dramatic ;) )  she is finally begrudgingly bearing weight on her legs. She hates it, but it has to be done.  Huge accomplishment. :)

I am tired, but I feel good that things are moving forward.  I even made myself an appointment to see the Doctor and Dentist !!  I just need to remember to go to them.

Friday, September 24, 2010

Keira Update

We were told Keira's info would be faxed to her Neurologist in Maine on Monday and he should do a med change THAT day. That, of course, did not happen. He called Monday afternoon, asked for info and said he would give me a call back.  I waited for a call on Tuesday. Nothing.  After 3 phone calls to him on Wednesday (2 from me, one from Seth) he finally called back and said that the discharge summary from Children's did not have enough info. We had MD's lined up to put pressure on him to work on Keira if he did not call back and Seth was going to storm the office by Thursday.  I told him to go to the link of her seizures on YouTube so he could see what was going. He did not have the precious EEG results in his hands from Boston and did not feel as though he could make a med change without them.  He looked at the video and ordered an immediate increase in Depakote again. Her diagnosis right now is two types of seizures. Clonic and Myclonic.  Only two days and no changes. It usually takes a few. On Monday we will go for blood work and he will probably add a medication on top of it.

We are waiting for our appointment with Dr. Expert in Boston on Nov 9th. Apparently, all of the other Neuros are scared of doing something because Dr. Expert might change everything???.  I have no patience for this stepping on toes crap. Yes, Neurology is not a perfect science, but at least you could try SOMETHING??? We will start bringing her to a feeding clinic at Maine Med so she can gain weight and get the right nutrition and I decided that I will work on her with bearing weight on her legs on my own.  She hates it, but it seems to be her only PT problem and it may be resolved once she is on the right seizure medication.

I find it very frustrating at times that MDs do not want to step on someone else's toes when it comes to a BABY's developing brain. The next time someone tries to defer us to the next Neuro I may have to be refrained from slapping him/her upside the head.  It is ridiculous that we are getting the run around about this.  R.I.D.I.C.U.L.O.U.S.  In the meantime, I will try to fill my time with, taking the best care of my kids as best as possible and doing projects around the house so I don't think about it too much.

Finally did something to the outside of my house.

The decks needed to be stained (the back one is still a work in progress) and the front of the house in general needs to get started on.  We will do a little at a time.  I decided to paint the door today because the conditions were favorable and it takes me no time at all to do tasks like that.  It is therapeutic, unlike cleaning the house, which is purely a pain because you never see progress. At least with a painted door or stained deck it stays that way for years.  We are also making a rock walkway to minimize dirt coming in through the front.  We will be planting a few flower bulbs so that flowers pop up in the front of our house in the spring for the first time.  Eventually we will get to shrubs etc....  Here are the pics of the door and deck.  You don't have to like the color because our family does.  Just admire my handy work ;)

Monday, September 20, 2010

JDRF walk for a cure for Type 1 Diabetes

They made it!!  It was touch and go.  Kailyn was developing a major cold, Mommy and Daddy were in Boston the day before. But, we made it home in time and Kailyn was determined sick and all to walk and make sure that she would not let down all of her fans and people that donated to find a cure.  Keira and I could not join them, but they had a blast without us anyway.  Kailyn raised and amazing $525 to help find a cure.  Next weekend she is doing the Diabetes Dash in Cumberland with her brother and father.  This is a new event. The 3rd year they have done it. Our first.  Here are pictures of them on walk day.  I am so proud of Kailyn!!

The cookout at the end. A VERY important part of the walk. ;)

Adventures in.... What the heck is going on here seizures?

We rushed to Children's Hosptial Boston on Friday Morning because Keira is starting to not meet milestones and her seizures are increasing and evolving.  These symptoms all pointed to Infantile Spasms. If they are infantile spasms time is of the essence and you DO NOT fool around. They admitted her to do a 24 hour EEG.  I have been told this is the #1 hospital for child neurology/ epilepsy in the country if not in the entire world.  People come from all over the globe to go there for an opinion. 
We left the next day with good news and bad news.  We were told that her seizures were clonic (not myoclonic), but the Epilepsy specialist did not seem convincing. The major problem with Keira's seizures is that they are very rare. The other problem is that Neurology is not an exact science and every Epilepsy specialist will have a different opinion on what track to take. I think he wants to wait for the MD with more experience to give more info and decide the course of medication.  He was convinced they were not Infantile Spasms (which is a good thing), but also told us that other seizures can cause delays.   He said to start services locally, call our regular Neurologist to get med changes and to work with the other Children's Hospital Epilepsy Specialist to come up with a plan.  He did not want to step on anyones toes and add meds that may change in a month. We meet with the other specialist in Boston on Nov 9.  So close, yet so far away.
Our local pediatrician called this am and has already called in a referral for an eating clinic at Maine Medical Center. Keira will chew now, but now swallow. She is not gaining weight and has lost a little bit.  She also made a  referral to a Physical Therapy and Occupational Therapy clinic for an evaluation.
I feel good that we are doing all that we can to make sure that she can develop normally.  Anxious to hear what Mr. Expert has to say.
Thrilled that Keira is still the happy go lucky, easiest baby in the world. (besides seizures ;) ) 
Here are a few pics of our stay in Boston and video of what her seizures look like now are on youtube. Let me know if you would like the link.

Daddy Reading Pat the Bunny

The EEG machine with Audio and Video recording. You can see the little picture of her in the upper right hand corner. The squiggles are the activity being recorded in her brain.

Our view of Boston if you looked left.

The sign that says not to swear Daddy.  I also was recorded because I ended up crawling into the crib and slept with her because the cot was like sleeping on the floor.


Monday, September 13, 2010

My latest creations

Seth has been asking for pictures of the kids to have for his desk at work for quite a while.  I did not order big school packages for either of the big kids last year and we don't do studios anymore.  If I click the camera enough times I get pictures I like. This is actually a hobby I have. Wait..... did I just say I have a hobby? ;)   Anyway, I took all of the most recent decent photos I have taken and made a collage of each child to put in three 5x7 frames. I use my own printer and photo paper that I bought at the store. The whole project cost $10 and 3 hours of my life (the printer was giving me trouble). The older kids wanted Keira in their collages. :) The best part about the process is that we can reuse the frames and I can update the photos. All three frames are supposed to be on Seth's desk as of this morning.   Here are the collages.

Saturday, September 11, 2010

Soccer, Sun, Fun and Feeling Normal

We had a family soccer day today. It started at 8am for Sam and ended at 11:30am with Kailyn.
It may seem like a pretty typical day, but WE are not a typical family. It has taken a long time for us to get to this day. A day without constantly thinking about issues going on with any of the kids.
I can say that I thought about Diabetes, Epilepsy and
Autism for a nano second here and there. (Keira had a seizure during her bottle and Kailyn looked like she might be low once) However, it was NOTHING like it was two years ago when Kailyn was first dx'd with Type 1 D and we were waiting for the sky to fall at any second. We tried to get right back into her normal activities, one of which was soccer, but going to a soccer game was NOT care free then. I can say that today it was and it was FUN!!! We ended up having to cease all extra curricular activities right after Type 1 D Diagnosis. Everything was routine and felt......well.... normal today.

We enjoyed watching our Kindergartner on his first official team. He was out there playing with great confidence and was even instructing some of the other children about the "rules". Something he is a stickler for. He may knowingly break them sometimes, but he calls people out if he sees they are breaking them all the time. A habit we are trying to break. ;) Three years ago at this time he was diagnosed with Autism. He could barely talk then and we had just started to use the PECS communication system to try and figure out his wants and needs. We hoped he would be able to function in society at some level, but thoughts about being on a team, let alone instructing other children, were far from our minds.

Our Third Grader bravely tried soccer again even though it was causing her to have anxiety stomach aches once we got there. We recognized those stomach aches for a brief moment and she got right back out there. Joining a soccer team may seem pretty normal and mundane for most third graders, but for Kailyn it is a huge milestone. Before her diagnosis we were into all the activities and she enjoyed them with ease. Once she was dx'd, anxiety about everything set in and she did not want to do any group activities. She turned a corner this summer in regards to this when I gave her a cellphone so she could attend vacation bible school. I decided that she needed to take the next step and join a team of some sort. We (meaning I) picked soccer. I did bribe her, but I am proud of her nonetheless. She had fun and was showing self confidence by the end of the practice AND she wants to go back!! I am pretty sure that soccer won't be a major part of her life in the future (You never know though), but we made that HUGE step and that is all that counts.

PS: We do have one problem. She does not like how her mouth guard feels. I told her to not wear it and she said that she has to because she wants to be a goalie! ;)

Tuesday, September 7, 2010

Have I told you?

Keira is getting into the sitting position on her own and can get down to.  She has sat for hours the past few days and today finally decided it was time to reach out and try to get something. Getting to the sitting position is not fun after a while when you can't get down.  The only things she could do were sing her Native American song, clap "YAY" endlessly and tell me how big she was over and over again. I think she is grateful she finally figured out how to get down.

When we took the kids to Jokers, Sam and Graham rode with me.  Joker was no where to be seen and this provoked many questions. Where was he?  Was he sleeping? What does he look like? They have seen him on the commercial so they know he exists.  I did not have the heart to tell them that Joker did not exist. ;) Graham actually calls it "Joker's house".

Kailyn wants to be a Rock Star for Halloween and is already researching costumes online. She told me today that we would probably have to go to Boston, New York or  Los Angeles to get the outfit because we don't have anything sparkly enough around here.  Um........., dream on kid.  She did find some pretty cool ones on the American Girl website.  Only one of a few websites she knows how to get to that sells clothing. lol

Monday, September 6, 2010

School has started. Labor Day has come and almost gone.

     Both kids like school and are starting to settle into their new routines. Kailyn's anxiety has calmed down and the Type 1 Diabetes management routine seems to be going smoothly. Two days without any calls at all!! Third grade is a lot more mature than I remember it being. Kailyn has already been introduced to YouTube via her music teacher (I consented, but did not realize what I was consenting to, if that makes ANY sense. LOL) and her parent handbook talks about weapons, drugs and bullying.  She wanted me
to read her the handbook, but I changed the subject. If something of that nature comes up we can talk about it then. (This is when I question, Should I home school her?) lol

     Sam LOVES school.  He is going to Kindercamp before his pm session a few days a week so he can do some unstructured play before Kindergarten. Kailyn still asks me to home school her when she is low and if
she is not feeling well. She tells me the reason she wants me to home school her is because she misses me.(awe) Not a good reason. LOL If she ever comes up with a good reason than I am totally open to it. Regardless, she happily got all of her things organized and ready for back to school tomorrow.

There are a lot of other things going on:

     I finished the girls room and Keira has moved in.  Her stuff is not, but her bed and body are.  She did great the first night, but tonight I had to rub her back a bit. Nothing in the grand scheme of things. I think she was upset that we were making her go to sleep and she could not talk to Kailyn anymore.

     Sam turned 6 on Friday. We went to Jokers for the first time ever (I avoided it for 8 years) during a time when most kids are in school. Gorham had Friday off so it worked out well.  I can't imagine what that place is like with a packed house and never want to find out.

     I am in the process of staining the front and back decks. What a Pain in the BUTT!!  I have already spent 5 hours doing it and don't even feel like I have touched the surface.  I am one of those people that likes to get a project done in a day because you NEVER know when I will get back to it.  Hopefully we won't have half finished stained decks for a few years.  (no pics yet)

     Here are the kids having some last minute summer fun with the pool while we were taking it down. They are not allowed to do this when fully inflated because all of the water can come out completely if you lean to one side by accident. LOL

     So to recap: Friday Sam's birthday Jokers am, Cake/Presents pm. Saturday cousins in the am and then rest for the remainder of the day. We were all wiped out. Sunday paint/finished girls room and moved Keira in, took the pool down. Monday stained the front entrance deck for 5 hours. Both Keira and Kailyn were acting either tired or sick. Could not tell.  Not a Labor less holiday weekend, but a productive one. :)