Thursday, August 26, 2010

We are getting there. School starts on Monday. (Hooray!!!)

I "think" we are ready for school. It starts Monday (FINALLY) All the supplies and instructions are at the Village School in regards to Type 1 Diabetes.  I forgot that we had to "train" a new school about Kailyn. She is 8 and in 3rd grade now. That means she moves to the 3rd through 5th grade school.  I also forgot about the additional supplies and paper work we have to do on top of all the regular paper work and supplies.  She has T1D supplies and regular school supplies to get this year.  She has never had to buy supplies before for school. Just a back pack and lunch box. This year she had a list. I forgot about those expenses. Both are now bought.
Kailyn went to 3rd grade orientation tonight and froze. SO happy I passed down that anxiety gene (sarcasm) She could not talk to anyone, even her good friend Hailey. She was sad afterwards that she did not say hi.  Then she freaked when it was first come first serve seating at open house and she ended up sitting with no one that she knew.  Apparently, the cluster of desks were in 6 and the 5 friends she knows were at one cluster with a little girl that she did not know. Might as well lather the anxiety on even thicker.(sarcasm again)   Life is hard enough at this time of year. Add on K's anxiety and some days seem to be insane. Looking forward to getting into a routine again.
Sam does not seem to be phased about going to Kindergarten one bit.  He does not seem to be too excited unless you mention it. No anxiety either.
The room is coming along to.  Almost done.  I need to get the curtain hung properly.  I thought I found a stud, but the screws are still coming out easily.  Also need to sand, do touch up painting, desk chair for Kailyn, clean, then move Keira in. Here are a few pictures:

This is the three of them watching TV on Keira's side. I thought it was funny.  The TV is in there for when we work on the room, but is coming out.

Monday, August 23, 2010

So tired.

School starting soon (Aug 30), projects going on, school shopping, Dr.'s appointments, 504 meeting, Sam's birthday soon etc...  I am feeling like a zombie, but a happy zombie.  A little anxious about the new school year and getting Keira's seizures under control, but she has been taking more liquids the last few days. Thanks to my friend Christie for giving me the advice to make her size 4 nipple even bigger. So yay!! Also, once the kids start school that will be done.(anxiety about school starting gone and a break for me)  I went to IKEA yesterday with my Mom and sister and had a blast.  Bonus Trader Joe's stop on the way home.  The closest one is 2 hours away. We have been remodeling Kailyn's old room to make it into a big girl/baby room, with each of them having their own sides with their own stuff.  Here are a few pictures of big girl side.  Baby side and both sides together pics to come.

                                             Child Like Pink paint, meet Hot Lips paint

There is going to be a desk where she is standing, just needs to be put on now.

Pretending to sleep.  The child like pink needs to be touched up a bit, white trim sanded and painted, (My kids got a little chalk crazy), desk put on, shelf for loft bed put on and curtain to separate sides up. Then it will be done and on to decorating Keira's side.  There is a big age gap so we want Kailyn to have her space.

Here is a ten month picture I took of the baby on the 19th: 8 teeth

Friday, August 13, 2010

Cute pictures of cute kids

Sam is SO COOL!!

He got an early birthday present today.  His birthday is Sept 3 and he will turn six.  His present is a new bike and helmet. Big boy bike and helmet to be exact.  He thought it was so cool that he could go so much faster on his new 18 inch bike opposed to his 12 inch Thomas one. His bike is now bigger than Kailyn's. I thought hers was 18 inches, but it is 16 inches.  She will have to wait until her birthday in the spring and will get a 20 inch bike.  It is amazing how they fly through the bike sizes.  Sam got a visitor from a man who saw him on his Thomas bike.  I am guessing the man will wonder why he does not have Thomas anymore? lol
Here is Sam on his new bike (which took me 3 hours to put together today)

Like the Boots??? :)

And the visitor with his Thomas the Tractor to show Sam because he saw him on his old Thomas the Train bike with the Thomas helmet.

Sam is doing really well.  He loves playing with friends. Here is a pic of the boys that came over to play today: Graham (my nephew) would not look

He loves to read books, dig in the dirt, play on the swing set, play with his sister, ride bikes, swim in their pool, draw and is a fantastic cleaner. I hope the cleaning continues.  He starts Kindergarten 1/2 days on Aug 31. We go with him on the first day Aug 30th.  He has some rudimentary alphabet and number skills, but it has been so nice out this summer that I have not pushed it. I have decided that the school can teach him much better than me.  He does not qualify for any programs because we delayed him going to school for a year and the specialist who tested him prompted him so he would get the answer. (technically he did not pass, but the prompting made him pass)  I am not worried about this, however, because they are SOOO worried about the testing numbers that they will be all over him like a swarm of bees for Reading Recovery or whatever other programs he needs to get.  He does not qualify for speech.  You basically need to not be able to talk completely to get that anymore, but I think he needs an ABA program to drill proper speech into him rather than going to someone 1x a week anyway.(that won't happen)  Hopefully he will catch on.   I am mostly worried that he will befriend Seth's ex-girlfriends son who is really hyper/out of control.  Sam tends to be a follower. Once I figure out his name I am going to try and tell him to stay away from him. lol (I am so bad)
All in all I feel pretty good about Sam and the tremendous progress he has made over the last three years. He has an appointment with the Dev Ped in October to see how she thinks he has progressed and whether or not we should pursue, press the school to give him services.  He could barely talk at this point three years ago. Now we can't get him to be quiet.  I have to remind myself that I wished for it and if you wish for something sometimes you do receive it. lol

Sam and his new buzz her earned cleaning. :)

Thursday, August 12, 2010

Keira's 9 month check up

Went really well.  She is developmentally right on track, if not ahead in some areas.(YAY)  Her only problems were that she has lost some weight and won't bear weight on her legs. The thought is that it is a sensory issue because she has the strength, but chooses not to bear weight on her legs at all.  It is a wait and see situation that I will be all over until she does it. She gets all over the place by rolling, rotating her body and pushing off on her foot. She scoots backwards and gets stuck in furniture too. Completely normal for now, but it won't be if it does not change soon. We are supposed to ask the Pediatric Neurologist about the weight bearing too. Our pediatrician does not seem to think it is a big deal at this point.  I told her Seth walked late so it could be all his fault-haha.
Her weight is down because she is refusing bottles. Whenever she drinks a bottle she has multiple seizures and she only has them now when she drinks. Sippy cups too because you have to suck out of them. Some days we have only gotten 5ozs into her.  I have to make a call into the Ped Neuro to update her progress tomorrow and will report this, but I was also told to wean her onto a cup.  With persistence we will be able to do this (so I am told).  I don't believe it.  The kid is awake 8 hours of the day and I can't see myself now trying to get her to down 24ozs out of a cup for 4 of those hours. I don't feel like I have time to be persistant.  I will try it, but with two other older active children I am not hopeful for success. That and the fact that she does not even hold a bottle, Yeah. lol  In the meantime, I bought new sippy cups and will take out the stoppers and got the fastest flow nipples for her bottle to see if that works.
No vaccines for a long while now.  People with Epilepsy are not supposed to get certain ones and her Doctor asked if she was getting vaccines today (she said because she has too, AAP), but agreed with me that it would not be a good idea to get them for a long time. Her system is too sensitive.
It feels good knowing that she is ahead of the game cognitively given all the challenges she has had so far.  SO, good appointment.
Now off to try the fast flow nipple. :)

This is when Type 1 Diabetes sucks

My older kids went up to camp today (China Lake) to hang with the family.  I have to be in constant communication with my Mother In Law about situations regarding Kailyn's Diabetes.(I have no idea how Sam's day went)lol  How many carbs for hash browns they get when stopping on the way up?  The infusion set fell off so how do I treat her? She is now in the 300 or 400's, does not have any testing strips left, ketone strips or her pump on for her background insulin. I told them to just get her home ASAP and have juice on hand just in case she goes low on the over 1 hour ride home. But, Kailyn had to miss out on ice cream cake and had to rush to get home. Not to mention she just can't go off for the day care free because she has Type 1 Diabetes.  I don't mention how sucky this stuff is to Kailyn, but it is times like this that I feel bad for her and feel a twinge of it not being fair that she has to deal with all of this stuff.  I never utter a word of this to her because her Doctor told me to never say your sorry or to show her that I was sad that she had T1D. We are always to let her know that this is how it is and she has to tuff it out.  She, in turn, has never said that she wishes she did not have diabetes, that it sucks or that it was not fair. Just that she wishes there was a cure.  I am SURE she had a good time.  They absolutely LOVE camp. We just have not done much this summer because of Keira's Epilepsy. We have to lay low to prevent seizures. Some days I wish I could take it away from her for just the day.  I can't and the show must go on, so time to forget it and move on.
Seth can put the new infusion set in, get up throughout the night to check blood sugar levels and put up with the whining.  I need to get my beauty rest in preparation for a tired day for them tomorrow. ;)

Tuesday, August 10, 2010

Just to look back on: What Keira (9 months old) can do Daily (when she feels like it)

Says consistently, Momma, yay, nana (night night or no no)
Shakes head no
Gives high fives
Gives kisses
Raises her hands when you ask her "How big is Keira?" (So big)
Claps her hands and says "ay"
Takes her hand and moves it over her mouth, (like a Native American song)
Rolls all over the place, rotates body and push off on feet to get what she wants.
Picks up little things with a great pincher grasp
Can eat by herself off of a spoon
Sits up unassisted
Pushes up on her arm and can scoot backwards (gets stuck under piano and couch)
Only 3 to 4 seizures a day
Makes us laugh and smile multiple times a day :)
also to reassure her Mom that she is developing on track ;)

Sunday, August 8, 2010

Kailyn wants to walk to find a cure for Diabetes!

And so we will!
Here is her page.

Kailyn Robie is walking with Team Kailyn on September 19, 2010 in Portland , ME.

Hi!! This year, I'll be walking with my family to try and raise money to find a Cure for Diabetes. I will be riding my bike with my brother Sam and my Mom and Dad will walk and push Keira. We have been practicing and I can ride even farther than 3.5 miles. I am faster than Sam.
Please help me by donating money, even if it is just a dollar, so that we can find a cure. I don't want to prick my fingers anymore all day and night or take shots and wear a pump. I do it because it keeps me healthy, but it would be really cool if I did not have to.If you want to come and walk with us you can. You don't have to donate money to walk with my family. Just come and have fun!!!
Thank you,

"Every hour of every day, someone is diagnosed with type 1 diabetes, the most severe form of a disease that annually accounts for more than $100 billion in health care costs in the U.S. alone. Usually striking before the age of 30, type 1 diabetes takes a harsh toll on people. Not only will they be insulin-dependent for life, but devastating life-limiting and life-shortening complications such as blindness, amputation, heart disease and stroke, and kidney failure are an ever-present threat. Insulin is not a cure for the disease it is merely life support."
"Type 1 diabetes is destructive both to children and to childhood. Controlling the disease requires 24/7/365 vigilance and imposes a grueling regimen. It includes eating a carefully calculated diet, checking blood glucose levels several times each day (by lancing a finger) and insulin injections as many as six per day or delivery of insulin through a pump just to stay alive. It means children and families living by the clock, day and night, for the rest of their lives lives that turn out to average about 15 years less than normal.

You can't outgrow type 1 diabetes. As JDRF International Chairman Mary Tyler Moore has said, "Diabetes is an all too personal time bomb which can go off today, tomorrow, next year, or ten years from now a time bomb affecting which must be defused." The only solution is a cure. That's why JDRF has a singular mission: to find a cure for diabetes and its complications through the support of research as soon as possible."

Thursday, August 5, 2010

Today is Kailyn's 2 year Dx Anniversary

Type 1 Diabetes.  Things were already a tad crazy around here back in August of 2008, my health problems and Sam being diagnosed with Autism less than a year before. But, I remember that day like it was yesterday. It was much like this one. Hot and humid, but a little more sunny.  Kailyn just wanted to be held all day before we went to the MD because she felt so crummy. 

Here is the story of her Diagnosis.

The feelings of hopelessness and despair are not there anymore. I no longer grieve for children that are "normal" because this IS our normal.  And, honestly, (like my mother says) What kid DOES NOT have something these days?  From the outside looking in we look like the perfect family. Would I like to get more sleep instead of checking blood sugars at night or worrying about highs and lows? Yeah. However, we are at a much calmer place in our lives.  Even though we are going through some challenges now with our youngest I consider myself blessed and happy.  I have three beautiful children, a loving husband and a great extended family.

Kailyn is healthy, happy, thriving in school both socially and academically and turning into a quite remarkable little girl.

I really hope the State of Maine does not cut these services.

Maybe I should send Sam up there to have a chat with them? Something he could not do 2.5 years ago before his developmental preschool taught him how to play and speak. If it were not for that school,(Woodfords Family Services Preschool, Westbrook) he would not be entering mainstream Kindergarten without supports in a few weeks. So, the State is really just going to be passing the buck to the public school and then to Adult Services (another DHHS program) for the kids (who will eventually become adults) that can't function in society because they did not get the early intervention. OK.. off my pedestal.
PS: Look into cutting Maincare and cut off the people who move here from other states (who previously were from other countries) because the services are so good here compared to everywhere else in the country.

Monday, August 2, 2010

I would like to personally thank the person who invented Easy Set Intex Pools?

Anyone know the girl or guy? Because really, they have saved summer for us the past few years. My kids LOVE their pool. Even Keira. She puts her little feet in there and kicks away, while squealing at her brother and sisters antics. They could not care less if people call the pools Redneck or Hick.(nor do I) It is just plain fun for them and easy for Seth and I to keep up with.  They love to do tricks and to show them off. Here they are doing quite a few of them for me last Friday. (yes, I know the side says no jumping, but we like to live on the edge) lol They also do handstands, flips and cartwheels. All hard to catch on camera. BTW our lawn is getting a tad crispy because of the lack of rain.

Like the green swim cap on Sam?

Keira Watching the Fun with delight

Low Blood Sugars and Seizures.

are making for not quite sleepless nights, but almost.  Keira's seizures seem to be getting better. We don't see any spontaneous ones lately, they are all brought on by stimuli or stress. For example, I gave her a bath this am and she had four seizures because she was scared of the running water and of getting her hair rinsed out.  After a while she was fine, but we want to minimize these for her so we are laying low. If she gets scared she has a seizure, if she is touched a certain way when tired she has a seizure and if she drinks a bottle she has major seizures. Major seizures don't seem to come anymore unless drinking her bottle, which is not optional.  She also always has more the more tired she is, but like I said, they are reduced. Anywhere from 50-70% on a given day. This is a GOOD thing. It means the meds are working.  We start taking a full dose tonight so we will be watching her like a hawk this pm-am. We try to make sure Keira gets her naps and does not get over tired, which means she does not go places very much, nor do we.(as a family)  It is making for a low key summer, but the kids don't seem to mind. Thank God for the person who invented Intex Easy Set Pools.

Saying Momma after her tubby

Naturally curly baby Mohawk

SO tired
Kailyn had REALLY low blood sugars the last two nights in a row. Last night was the worst at a 38. We get scared when she is in the thirties during sleep. Our worst fear would be a diabetic coma. She was really good at waking up during lows, but is not anymore. This means Seth or I will be getting up at one hour and two hour intervals throughout the night until she is completely back on track. I adjusted her carb ratios for night time and hopefully tonight she will be back within her blood glucose range 80-150. Thankfully, Seth can wake up multiple times a night and go to work and still function. I am also thankful for my Mommy Radar. I always seem to feel deep down in my bones that she is low.  Of course, Kailyn woke up late this am acting like a bear because she was in the 300's. Over correction.  It's quite unbelievable how blood glucose levels can effect ones mood.  Can you imagine this pretty face grumpy?