Friday, December 31, 2010

Last Funniest Sentence of the Year.

Unphased, "Sorry, don't worry, it's just insulin."-my sister.  This was in the movie theatre, after I mistakenly shot it at a man via the pen. Three seats over into the other row. He was in front of my sister.  If Kailyn's blood sugar levels are high we have to bolus her with an insulin pen instead of using her insulin pump. Apparently, I could not see that the cap was still on and cranked it way up hoping to get some out. Kailyn figured out that the cap was on. We do a test shot into the air or carpet etc.. It's like water and not harmful to other people.  I opened it, pressed it down and it shot out before I could even think.  The guy thankfully laughed it off, but I wonder if he told anyone he was shot with insulin today??? ;)

The movie Tangled was adorable. All the kids liked it,(the adults did too) even though there were some scary parts for Kyleigh and Graham (they wanted to go home during those parts). I reminded Kyleigh that it was pretend and by the time I did that, the scary part was over. Getting everyone settled before the movie was a little less than a nightmare, but we did it. All four of our kids went to see a movie together for the first time as part of their New Years celebration. We partied it up as a family of five tonight. We watched the kids fireworks in Boston at 6:45pm, while eating Burger King and Sebago Brewing take out. My kids are safely tucked in bed and asleep as of 9pm and I am sure Katie's kids are too.

Happy New Year!!

"I wonder if 2011 will be boring?"

These were the words out of my husbands mouth last night. I paused for a minute and wondered what boring meant and thought to myself: "Oh, he meant no major anythings!"   My answer: "If we look at the last 3 years the percentages are not on our side. Lets hope for normal, whatever that is?"

Bad major things the last three years (............. means I'm not telling you! lol)

Autism Diagnosis
Type 1 Diabetes Diagnosis
Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
Birth of our third and last child, which led to....
Pulmonary Embolism and DVT. Good chance of dying.
Recovery of the above PE and DVT (So much pain)
Infantile Epilepsy
Trips to Boston
Failure to Thrive
G-Tube Surgery
Weight Gain (Me)

Good things:

My husband: He is healthy (as far as I know) continues to be able to provide for us, is a great father and my rock. Things get rough, but we always make it through it.

My children: Sam has made improvements by leaps and bounds. No one would know he was diagnosed with plain Moderate Autism 3 years ago.  His report card was a pleasant surprise!! We are getting use to life with Type 1 Diabetes. We would rather Kailyn not to have to deal with this, but she is thriving in and out of school. Keira: The fact that she was born!! I can not imagine life without her. She is so much fun, an easy baby besides the whole epilepsy thing, and just pure joy!! Just as recently as 3 weeks ago was the last time we saw a seizure and she is now in the THRIVING category. Gaining new skills every day. We got the all clear after an upper GI yesterday to get her therapy to try and get rid of the G-Tube. We hope to see continued Physical development.

My Extended Family: We could not have made it through the above without them. We love them very much and are thankful for EVERYTHING that they have done for us.

Here's to a non-chaotic and Happy New Year!!! :)


Wednesday, December 29, 2010

Wii live the life

Been a while. I have been doing the Christmas, Eating, Playing, Sorting/Cleaning and Sleeping thing.  I crashed the day after Christmas and made it out the door tonight in search of Wii gear and new winter boots at LL Bean. After I remembered that my own car is not working. Totally forgot it stopped working on Christmas Day. (Who does that? Forgets that their car does not work???)  Guess I better get on that.

I went to BJ's first and as I was paying, promptly realized I forgot my Debit card. Par for course for me. Do you see a trend here? I don't get upset or annoyed at these things because this is part of my daily life. I lose my keys, wallet, phone etc.. on a daily basis and know that everything will work out at some point.  I went back home after getting nothing done at BJ's, got it and went to Walmart instead to get more Wii remotes and nunchucks since we are now a Wii owning family. The kids are just wild about it and are the PERFECT ages.  They are happy with just the Wii Sports Resort games. I can't imagine what they are going to do when they figure out there are hundreds more. Just Dance 2 comes in the mail tomorrow and I personally can't wait for that. (The reason another remote HAD to be purchased)  Now we just need rechargeable batteries and a charger because they have been going through a set a day.  I normally would not allow so much gaming time, but it is Christmas and pretty darn cold out there. If I make Kailyn go out when it is too cold she won't go out for the rest of the winter.  Sam on the other hand, went outside with just his boots on and his jacket unzipped.  Had to wrangle him back inside before he got blown away.

Keira is doing well. I hesitate to say that she has not had a seizure in 3 weeks.  The last time I said that she had them the next day, but I will say it again because she had them with a fever of 103.9. Not sure why they have stopped (hopefully they really were benign), but we did slowly titrate her off of the meds. She is not on anything as of 3 days ago. We hate the thought of the major heavy duty meds in her system and will do Ketogenic if it happens again.  She has had MAJOR improvements. She is not the same child she was just a little over 2 months ago. That child was frail and basically just stayed in one place. She now moves really fast and gets into everything. Loves trying to get in on what Kailyn and Sam are doing.  She is still behind in gross motor and feeding areas, but her receptive and expressive language is right where it should be and the other two are coming along.  She still gets all of her nutrition from the feeding tube. We have to see a GI, Nutritionist, Feeding Team and have an upper GI done.  Then the Feeding team and her Speech Therapist will help her learn how to eat and drink again. She would be happy with us just feeding her through the tube for the rest of her life though. ;)  We go to the GI tomorrow and the Upper GI on Thursday.  We have never seen a GI in Maine, ironically. Only in Boston when they said she needed the feeding tube STAT.  Not sure what the GI will do except take our $20 co payment and refer us to the Nutritionist, who will then see us, take our $20 co payment and refer us to the feeding team.  Thank goodness we don't pay for the Speech Therapy and Physical Therapy.(They are both awesome BTW)

Kailyn is doing well too. I have no idea where her numbers are at, but they seem to be around the range they should be. I also have NO idea when her next appointment is. I think it is around now. I should probably call about that. It is very hard to manage the medical needs of two children. I try my best, but right now I feel like Kailyn is getting the short end of the stick. There is only so much you can think about in one day and changing her insert and making sure she is not high or low all the time is all I can handle.  There is a lot to Type 1 Diabetes management care that people do not realize.  Luckily, she is old enough to do a lot on her own. We just need to double check, but she can't adjust the pump. Only the Diabetes center and I can do that.

Sam is Sam. Happy go lucky unless it's bedtime or he is extremely overtired. (Then watch out)  He is confused about this whole vacation thing, but does not seem to mind. Numbers and days are hard for him to grasp.  His strong point is definitely reading.  He wrote me a lovely note that said. Sam Loves Mommy Santa! :)  We plan to go to a movie and out to eat one day and will put the Wii to good use the rest of vaca. Daddy only works 2 days this week and since my car does not work he really is not working a full day tomorrow. He has to take us to the GI. Not sure what we are doing New Years, but I prefer to not make plans because they never work out. lol  Just winging it!! :)

Sunday, December 19, 2010

A weekend of B's ;)

We were supposed to have Kyleigh and Graham Bam over on Friday night to Babysit, while their parents went to my sisters company Christmas party, But Kyleigh was Burping (what both Graham now calls and Kailyn ironically did call throwing up) So instead, Kailyn and I went to the Christmas Tree Shop and did some "just for fun shopping"  I am already done with my shopping. She Bought Both her Brother and Sister presents with her $15 Budget, which I thought was Beautiful and very thoughtful of her. Makes a Mother very proud.

We found this Boxing pen Santa to be a Bit disturbing!! But, it made for a good laugh for the Both of us.

The next day was very Busy!

First we went to Sam's first Basketball practice with a team ever.  8:00 am. The whole family went. Kailyn chased and played with our friend Kelly's son Jack with some Balls and Keira was very excited about the  Balls too. She loves them and was not happy she could not get her hands on one. Sam had a lot of fun, made a Basket and keeps asking when he gets to go back. Not for a couple of weeks.

Brownies was at 11am. I went with Kailyn. The troop went and donated food to the food pantry and then went and made pine cone ornaments with Birdseed for the Birds. She hung them on real our tree on the deck and made even more today. She had a Blast and is ecstatic that she finally made it into a troop.

Birthday Party with Sam was the next thing on the agenda. It was for his friend Sam L (in his class) at a swimming place from 4-6pm. He had a Blast and was only Bummed that he had to wear a life jacket. They give them a swimming test at the Beginning and he swam the length of the pool, but stopped when he was swimming on his way Back. (on his Back) I don't think he would have stopped if he had known. All the other Boys had to wear one so it was not that Big of a deal, however, it is not over their heads.  I personally can't stand the place, But some people seem to love it.

Once we got home Sam immediately went to Bed. He was exhausted.  I was too. I went to Bed and Basically did not get up until 3:30pm today. My sinuses were filled up and my head hurt horribly. I took Claritin D and now I feel fine. Can someone Be allergic to a fake Christmas tree? lol

This week will Be Busy. Keira has Speech and Physical Therapy tomorrow. We have a family Holiday party at Kailyn's School on Tuesday, Keira's first GI MD appointment in Maine on Wednesday and the rest of our time will be spent trying to keep our kids calm so we can salvage any sanity we have left Before Santa comes.

Tuesday, December 14, 2010

Keira saying spider, trying hand movements, saying all done and momma! Huge Developments!!

I am holding my breath that this is the beginning of more to come!!!  Notice her saying spider, momma and all done. It does not have to be said correctly for it to be counted as a word.  She also tries to do the hand movements and screams at me when I stop usually, but this was not caught on the video. :)  This all took place around 1am because her teeth are hurting. You can see her put her fingers in her mouth too.

PS: No seizures still except for when she was sick with a very high fever!!  Starting Stage 1 baby food, but she refuses to drink using any sort of cup or bottle.

Saturday, December 4, 2010

Some Serious Christmas Preparations

Our house is decorated. Thanks to the kids. I have decided it is a kid themed Christmas and they did the decorating. (with a little direction from me ;) )We have chains linked all the way around the living room, in the playroom, Sam's room and Kailyn/Keira's room. Paintings hung in different areas too. The kids went with their grandparents to get the 'real' tree that we put on our porch and decorate for the birds today. We would have done the traditional Gingerbread house, but I decided to quit that tradition. It is way too hard to count the carbs and little fingers like to steal the candy off of the house at random times.  That was part of the fun (at least in my opinion). Last year was a mess with blood sugars out of control.  We will move back to sugar cookies (probably the precut kind) ;)
I have all the presents, stocking stuffers, wrapping paper and the cards are made. Now we just need to wrap the presents, send those card and for Christmas to come. I am usually doing all of this at the last minute, but I want to be prepared this year. "Expect the unexpected"  Kailyn was shocked I was letting them put the tree up right after Thanksgiving. She said, "I did not think you would really say yes!" lol  A lot of my time when the kids are in school goes into therapy and Doctors appointments for Keira so it will be a nice load lifted off my shoulders when everything is done. Hopefully, Grammie will make us one of her beautiful wreaths again this year ;)
What do I want for Christmas?  Tranquility for Seth and I. Joy for my children.

On a hunch

Call it mother's intuition or just a gut feeling. I decided that the Zonisamide was not helping Keira's seizures.  Her seizures are triggered by sleep (among other things) and the Z med is not only known for making kids sleepy, but for making them have more trouble thinking/concentrating.  I got Seth on board and we slowly titrated her down to zero. Her last dose of  Z was on Tuesday and the last seizure we saw was on Tuesday so far. I am knocking on some serious cyber wood. I have been hesitant to say anything only to have them return the next day. BUT, I DO want to say something!! She has had a few random days without seizures, but none were consecutive!! This is 4 days without any noticable seizure activity.
We have seen a few other developments and go to the Neurologist on Monday.  She is only on Depakene 3x's a day now. Still a hard core drug for her little body, but she has made great strides since her surgery on October 20.  The most notable being her chubby little cheeks.