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!!! :)

-Kristen

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!! :)

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.

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.

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.

Hard at work the day before Thanksgiving

Making things for Christmas and working on standing too. Sam is still asleep because it is a day off from school and he was up late, but I am sure that by the time I am done writing this post he will be awake.
Keira worked on standing this am. She hates applying pressure to her legs, but did pretty well and is good at falling down on to her bottom by herself. It feels as though her legs are not strong enough to hold her body weight now. lol   Here she is doing it, having fun, sort of.... lol

Today 64% for weight and 96% for height

5 weeks ago today 7% for weight and 96% for height

Having Fun

That was hard work Mom

I guess the gross motor changes after a surgery and it takes a while to get back to where you were in some areas. Strength being a big deal. She not only has to heal from the surgery, but deal with all the weight she has put on.  She is doing really well though.  Went right down for an early morning nap. ;)

Here the kids are working hard on Christmas Crafts, with Kailyn the Directress. They got right down to business after Kailyn ate breakfast and Sam has now made an appearance. My niece Kyleigh came to join in on the fun. (i.e. help entertain my kids) :)  She does this often. The benefits of your cousin living a 1/2 mile away.

Kailyn the Ham and Sam the Kook

Kailyn is doing well too. She FINALLY got into brownies and knows some kids in her troop. She is so excited. She happily goes off to school on most days and calls me from her cell phone when she gets to Grammie and Grandpa's (I can see her) and then when she is at school. I can see the school from my backyard. :) The other day we had a rainbow near our yard. She swore she walked right through it, saw an array of colors and a fleck of green that could have been a leprechaun.  She thought that was the luck that got her into brownies. I went with it. ;)  Hey, you NEVER know. (except for the part I got the call before the rainbow) Here is a picture of said Rainbow.

Kailyn likes to be stylish and here she is hamming it up with her new Christmas clothing

Her insulin pump sort of Pops out of her tummy too. ;)

Sam is a Kook as I like to say it. I can't show the picture because he is in his underwear (he is very sensitive to this sort of thing), but he was trying to hide from us in order to avoid going to bed and had to think quick because I was coming fast. He was in the playroom and put a big green ball, bigger than his head, in front of him. He was laughing because he knew we could see him. Picture a 6 year old boy, with just dark blue underwear on, holding up a green ball in front of his head so his parents can't find him. He gave us a good laugh :)

Sam loves Kindercamp and School still. He whines the whole morning the two days that he does not go to Kindercamp in the morning and asks several times, "How many more minutes till I go to school?". Me, "120". Sam, "Ahhh, that is toooo many!!!" :)  Apparently Keira and I bore him. ;)  Oh well, next year he will be gone all day and will probably be begging me to NOT go to school. :)

Professionals helping make Keira thrive

1. Her Pediatrician
2. Speech Therapist
3. Physical Therapist
4. Pediatric Neurologist
5. Pediatric Epileptologist
5. Pediatric Surgeon
6. Pediatric GI MD
7. Occupational Therapist
8. Pediatric Geneticist
9. Pediatric Nutritionist
10. Visiting Nurse

Keira=Priceless

So how are things?

Pretty good in my opinion.
Of course things are not perfect. As in, 3 kids without any issues, just worrying about getting homework done and making it to soccer practice on time. But, as perfect as it can get for all we have been through in the last 7 months.
Four weeks ago we were scared to death Keira was headed on a downward spiral. Losing skills and slipping away. Now she is going full speed ahead. Crawling on all fours very fast, pulling up onto things on her own, playing social games with us and getting into things she should not. We actually have to baby proof now because she is not just sitting here like a fragile baby doll.  She still has a way to go, but she is moving forward instead of backwards. I could go on with all the nitty gritty details of things she can do now that she could not a mere four weeks ago.   The seizures are not under control, but that will be a work in progress and having the right amount of sleep keeps them down.  The biggest change that people notice is the meat she has put on her bones. Over 4 pounds by now.  Chunky cheeks and still a smile that melts my heart.

If you look closely you can see the feeding tube cord coming out of her leg. That is what is fattening her up. She smells like Vanilla Pediasure. ;)

I am NOT crafty by any means

BUT, I have happened to be able to put together signs of each of my kids name. It involved wood, permanent paint and a glue gun. Pretty scary.  Two were done before the kids were born (9 and 6 years ago) and one, well...... 13 months after she was born. lol  I wanted Keira's to look exactly like the others so she did not feel shafted and could not complain at some point. I could not find the A in her name at my AC Moore, but Grammie was able to get more than one at the one in Augusta. I really wanted hers to be the same for some strange reason??   I did it and now they need to be hung up. Can I borrow a stud finder Grandpa? ;)  Kailyn is bummed that hers is not the color of Keira's, but the rule is that I get to pick out the color before they can talk and purple is my favorite color. I figure if I make Keira's fuchsia then she will like purple. A Mom can try ;)

It Is World Diabetes Day

We celebrated it like any other day. I did tie two ribbons at the end of our drive way to show support for both Diabetes and Epilepsy Awareness months. Having Diabetes in our life is normal now so we really don't think about it unless a crisis arises. Kailyn is quite good at counting carbs, understanding the importance of the nutrition and using her pump. We have to double check and do the inserting of the needle, but she is well on her way to independence. Do we wish we did not have to deal with Type 1 Diabetes? Yes, but we don't think about it all the time. It is only really scary when she is sick, low and has ketones. THEN we have to think about it A LOT.  Right now she is not, so we live life like getting her finger pricked and having insulin is normal.
We ARE thankful for the invention of insulin less than 100 years ago. Without that, we would not have our amazing little girl in our life.

What do you get when you give a baby with an undiagnosed form of Epilepsy

and having trouble eating a G-tube?
Developmental milestones!!!!!
Keira is:
Crawling
Giving and getting
Pulling up to her knees
throwing balls and any other object she can get her hands on.
Is REALLY strong. Can lift small tables etc..
Says Momma, Dada and Hi on occasion
Gives high fives again
Gives incredible cave kisses
Claps on occasion and waves high on occasion (still working on consistency)
among other thing I probably have not remembered.

She still can't eat and is having seizures (sometimes none and a lot today because she is sick with croup), but the development makes us feel so much better!

Here she is outside playing with her brother and sister today.

One of those normal beautiful fall days (at least for us)

When the kids play outside while your Mother in law (Thanks Grammie) rakes the leaves in your yard because your husband is on call and was up all night.  He did help, but looked like he was going to fall over doing so.

When you are still staining the deck because it is a project you did not realize would take so long. I have one side to go and it WILL get done tomorrow. Along with the raking as long as Seth does not get called out again.

When your baby crawls around in the leaves with delight. Exploring the world of fall that she has not gotten to do before because she just started to crawl and pull up to her knees on to things. This all started once she got the G-Tube.

When your kids talk your head off non stop about what they are going to name their horse when they get one. Blue Jeans like Hannah Montana (of course) I did not listen to all of the details. I probably owe her a horse knowing Kailyn. She works out deals with me and I am not fully listening all the time. She Does. Not. Stop. Talking.

When you send your 12 month old inside to get her 100 calorie G-Tube feed at 3 so she does not lose energy and she protests. (a good thing)

When you send your 8 year old Type 1 Diabetic in to get her Insulin Pump infusion set changed because it has been 2 days and it has to be done every two days.

When it is overly warm for fall and you feel good doing the mundane task of staining the deck in the sun because you can drown the sounds of the world out (whining kids) with your ipod music.

When your husband makes Trader Joe's pizza for dinner and it tastes soooo good. Especially the Buffalo chicken one.  I need to put that on the must buy every time list. ;)

Houston, Keira has gained 2 pounds!!!

This is in just a little over 2 weeks. She is tolerating her feeds well through the G-tube, has more energy and got her cute little cheeks back. Three days after her operation she started to crawl on all fours for the first time. She moved slowly, but she was doing it. :)  (and still is) She is still moving slowly, but the physical therapist we met with said that it usually takes over a month for them to get back up to speed again. She was pretty impressed with how well Keira was doing when she met with us at our house on Monday.

Keira is getting wrap around care. This means that she is getting services from the Visiting Nurses and they all come to our home. She has a regular nurse to help with the G-tube aspects, a Physical Therapist that will come 2-4 times a month, a Speech Therapist to come every week and OT every week. They are going to try and close the gap and get her back to where she should be. I never thought that she would get this type of care so quickly. I am thrilled to say the least. The even bigger bonus is that I really liked the PT and Speech Therapist we have met already. The Speech Therapist lives in my hometown of York. She is also still being seen by the Pediatric Surgeon, A Nutritionist, A GI Doctor, her Neurologist in Maine, Epilepsy Specialist in Boston and her Primary care Doctor.

She has already regained some of the skills she lost too and was showing off for the Speech and PT ladies. I am not sure if the Medication, Epilepsy or lack of nutrition is causing the delays or a combination of all three, but the nutrition part has already made a HUGE difference. Hopefully, they will find a cause for the eating seizures or a medication that works. Finding medication that works seems to be a crap shoot unless you know what the cause of the seizures are and even if you know the cause they don't work 100% all the time.

Her seizures had definitely reduced and we had 2 days where we did not see any at all. Then we started to see them creep up again. I called the Neurologist because you generally give Depakene 3 times a day and the Neurologist on call prescribed it for 2 times a day (not a Ped Neuro) when we had our Depakote debacle. Our Neuro said to do it three times and this has reduced them again. She only has them when overtired now.  This is why nap time is crucial. The times we saw no seizure activity was when she had great nap days.

We go to Boston again on November 15th to see a Pediatric Geneticist. We have no idea what will happen, but I assume it will involve more blood being drawn. The Epileptologist from Children's insisted we do the Genetics in Boston.  He was fine with the G-tube surgery being here, but the Genetics piece was not to be done in Maine. lol 

I put my Google PhD on hold and will be concentrating on the progress that Keira makes instead of worrying about what she may or may not have.  I will also be working with her on all the homework we are given from the different specialists. What I do know now, is that what she is going through is extremely rare and no one has come across a case like it before. That may be why I can't find anything about it on the net. She is getting an Upper GI to see what amount of liquid she can take before having a seizure so that the Speech Therapists will know what they can work with and what is going on when she is swallowing. I know what those results will be already. ;)

She is STILL a really easy going baby and is my easiest child bar far. (can't talk back ;) ). However, getting her ready for the day and for bed at night takes one hour each time (and she does not eat food).  We have to change her feeding tube bags, fill them with her Pediasure, give medication (It's tricky), change the gauze, prime the machine, put tape around the medicine port so it does not leak, thread her tube through her clothing so she can not get to it among other things I am sure I have forgotten. Seth is finally doing this on his own. (He won't do things until he has to, so I have left the house at night a few times)  Hopefully, we can get into some sort of groove to cut our time down.

The site around her G-tube may be infected so we are off to the Surgeon's office tomorrow. He said that there was a 100% chance that we would be back and he was right. It is red and sore around the site and some yellow puss is coming out (yuck, I know)  I try to keep it as clean as possible, but these things can't be prevented and are very common. 

This is a picture of exactly what Keira's G-tube looks like, but it is not Keira. That tube puts the food right into her belly. Eventually we should be able to bolus right into the button instead.

I am sure there is more that I am forgetting to tell everyone, but this is where we are at for now. We wish we did not have to go through the process, but we try not to think about it and cherish the precious little baby we have and all the accomplishments she is making again.

These are pictures of Keira

Almost done with her 6-12 month clothing because of her height, not her weight. :)

Got Hair??  Look at her chubby legs :)



Kailyn and Sam

Kailyn loves Cheerleading, Scrapbooking club, Chorus, Her brother and Sister, Crafting/Painting and Playing with friends.

Sam loves Soccer, Watching TV, Kindercamp, Raking Leaves (doing outside work), Riding his Bike, Doing projects that Kailyn does and Playing with friends.

They both LOVE playing with their cousins and had a blast with them on Halloween.

They had an iTouch that lasted a week because I upgraded to an iPhone 4......until Sam spilled water on it. Kailyn's School is collecting old iPhones in order to compete for a grant, so I will send it there tomorrow.  This is why my children can not own electronics. They kill them with water.  It's ok with me that they are the only kids without computers, video games, Wii's or DSL's.  Save's money :)

Kailyn asked for an American Girl again this Christmas that she will not be getting. She wants them every year at Christmas and then never plays with them all year. I need to take us off of the mailing list. The catalog this year is exquisite and makes me want to get a just like me doll too. ;)

Sam wants a remote control car as usual. He gets one every year and ends up destroying it in one way or another. Both want some sort of Spy car they have seen on TV.  It amazes me at how early Christmas gets every year. I went into Target and Old Navy today and both were decked out for the Holidays already.  So, Christmas now lasts for 2 months out of the year. Wonder if they will have Christmas and Halloween candy side by side next year?

In my opinion, both kids are doing great socially and academically at school. They have academic "standards" in Gorham that they want the kids to meet, but the standards keep getting higher every year. If Sam had gone to Kindergarten when Kailyn did he would be meeting the standards for Reading right now. He struggles more with Math. If he went when I went to school he would not be getting Title 1 services.  Kindergarten is the new first grade. I don't get letter flash cards sent home to work with him, we get sight words sent home to memorize. He also reads a ton of books to me.  I am pretty proud and happy with how far he has come. He absolutely LOVES school and gets very annoyed on the days that he does not go to Kindercamp in the morning. (He is pm Kindergarten)  I work with him for about an hour on the two days he does not go. During the entire 3 hours he has to wait to go to school he asks, "how many more minutes till I go to school?" at least 20 times. Wonder how long that will last.;)  His teacher said at his conference that he was a "Joy" to have in class.  I wish they behaved as well at home as at school. ;)

Kailyn is a Math whiz. She does great with Reading. She loves the Box Car children books and Ramona right now.  She has trouble with Spelling. I think I had the same words she has in third grade in high school. lol  Seth and I asked her tonight if she ever learned what vowels were and she said "huh?"  We said, "You know,  A, E, I, O, U and Y?" She just looked at us with a quizzical look on her face. SO, I am going to go old school on her and teach her vowels like we were taught. It's worth a shot. :)

We have to decorate a family Turkey Poster for Sam's Kindergarten class this weekend and hopefully will get to relax. I want to finish painting the deck and I am sure Seth will be begging me to rake the leaves when the Patriots game is not on. ;)

Here are pictures of the kids doing things they love.



"Where's the Beep?"

We now have two pumps in the family. An insulin pump and a feeding tube pump. Both beep at various times and sometimes even at the same time.  I find myself saying quite often, "Is that you or Keira beeping Kailyn?"  If Kailyn beeps, it could be because she is doing various things with her pump. Whether it be testing, bolusing, eating,  has a low reservoir or low battery.
If Keira beeps, it is usually because she has no formula left or has a kink in her tubing. Kinks in her tubing are the most annoying part of the whole thing right now. We are SOOO happy she is not having seizures with eating and drinking anymore, but she moves around a lot and by the end of the day the tubing is quite a mess and she beeps constantly. I even showed Kailyn how to pause, untangle and restart so I don't have to get up so much. LOL  Hopefully we can move on to bolusing during the day soon so she can roam free.  She is supposed to wear her cute little back pack on her, but it is about a 3rd of her weight, so instead I just let her drag it when she doing her little army crawl. I need to get a picture or video. It is so cute. :)

Keira Got a G-tube For Her 1st Birthday.

She turned 1 on the 19th and had the surgery the next day. Isn't that what every little baby wishes for? ;)   Well, her parents did because she had not gained weight in 6 months and was slowly falling off the charts in weight. She was in danger of aspirating on her food/formula and was almost always having seizures while eating. She would eat just enough to keep her body satisfied. The minute she had enough she refused to eat. This was all documented on the Video EEG done at  Children's Hospital Boston. We were fortunate enough to have had the surgery moved and done even sooner in Maine. He did a Mitochondrial biopsy at the same time. Now, we are trying to get 960 calories a day into her body to plump her up. This will be done with a continuous 24 hour feed going into her stomach.  They say it won't be like this forever and we can work up to bolusing meals or just doing the continuous feeds at night, but for now, she has to have a cute little back pack follow her around.  She does not have the strength yet to actually wear the backpack, but hopefully when she is fully recovered she will.  If not, I will be following her around with the bag while she is awake. I also imagine her dragging it when I am not looking.

Her recovery in the hospital was uneventful and the Doctors commented to her frequently, "Don't you know you just had major surgery?" :)   She did have her painful moments that I had to rock her through, but I think the worst part for her was not being able to get on the floor and play. The feeding tube is long and sticks out of her stomach at this point. (for the g-tube unsavy people like me) I had no idea what it would look like, but for now we plug the feeding bag (that sort of sounds like she's a horse lol) into a tube that come about 3 feet out of her body. We also give her the medicine that way through a port. On Wednesday the big reveal happens. We still do not know what it looks like under her bandages.  She smells like Vanilla Pediasure because we can't give her a bath.

Once we got home we did have to troubleshoot medication and she did throw up quite a bit the first night.  They were giving us Depakene in the hospital, which dissolved well in water, but Depakote does not.  So we tried to feed her the Depakote sprinkles and it set off a reaction of throwing up 4 times, with the last being at 5am.  I crushed up her Depakote as well as I could with a herb crushing bowl and gave her some (not quite sure how much though) through the medicine port.  If we could not get the medicine in we would have to bring her to the ER and THAT was not happening!! (unless I think I am dying I seriously will not go there) In the meantime, the Neurologist on call called in Depakene in liquid form for her to take from now on. It's not exactly "the same", but it is controlling her seizures along with the Zonisamide.  She threw up yesterday when an unnamed person (not me) carried her up to her room by her stomach.  We are slowly titrating her up to the 40 calories per hour that they want her to be on so she does not throw up. Once she is tolerating that we will do little bites of food for taste. Little bites do not cause seizures and we want those taste buds to develop.

Here are some pictures of pre-surgery, post-op and recovery.  We barely have to give her Tylenol now.  She never cries and does not seem to be in pain.  She does get tired quickly, but we are 4 days out and I expect that to get better.

Pre-surgery on Wednesday with Nanie

 Post-Op

Starting to take off her No-No in recovery

 Playing in her hospital room a few hours after surgery

 She finally crashed

But woke up and found a cord to play with

 Puffy face the next morning.(Thursday) Apparently, it is from all the fluid they give them in surgery.

 Taking a nap with the G-tube finally hooked up on Friday

Finally at home again on Friday, sleeping in her car seat. Must have felt comfy in there. It was her first good nap in a while.  She still has 2 inches and 14 pounds before she outgrows it. :)

 At home the next day playing. Do you see the tube taped to her back so she can't get to it? :)

The tube goes all the way to this cute little back pack that has the pump and the bag with the Pediasure in it. The pump only lasts 4 hours without charging it.

 Tube to back pack picture

 Playing with a cord that is not a feeding tube to give us a break from telling her not to touch the other one. Hey, you have to pick and choose your battles. :)

 Just Playing

 Keira this morning. (Sunday Oct 24th)

playing with her favorite toy. Our Sweet Angel.

I got my second wind (as usual) so here is an update.

We went down to Boston yesterday and the Epilepsy specialist (I know there is a specific way of saying it, but I can't say it right) lol  is being very aggressive with her treatment.  He does not know what is going on, but has ordered every test under the sun to try and figure it out.  We got the Lab work done last. After our visit to the GI. One test came back really high and that was ammonia.  (The genetic testing will take longer) He called our primary care Doctor early today and asked that we have that level rechecked to make sure it was accurate. This assured me that he was on top of things.  We have had to beg for results from the other Neurologist, so this was a nice change.  The high ammonia levels could be from the tourniquet, her being sick (which she is not visibly sick, but both siblings have colds) or the Depakote.

She also has an appointment to have surgery to put the GI tube in next Friday morning. He rushed us right down for an emergency appointment with GI. We got scheduled with the nurse practitioner, but she had the Doctor and nurse educator come in because she needs to get the surgery right away. She is not getting enough nourishment and it is VERY dangerous to eat while having myoclonic seizures. This is the first we have heard about this. Probably because what is happening is very rare and even the expert Doctor with years of experience has not seen this many times. (if ever?) We go down to Boston next Thursday for a pre-op appointment and have a hotel room reserved within walking/shuttle distance to the hospital for 3 nights.

I went with her today and got her developmentally assessed privately. They said she is at a 9 month old level and we will start services, for speech/OT and PT within a month after the GI tube is placed, healed and things have settled down.  CDS has drastically cut services AND many providers won't take CDS kids anymore (because the State is not paying anyone and when they do it is way less than insurance) so it is better just to go through our insurance. The good thing is that she has been doing some of the things she had lost again over the last 5 days. Hopefully that continues.  I wonder if it has to do to the Depakote and ammonia.  We decreased the Depakote and she got some skills back?? hmm.....  Our goal is to get her back to where she should be and make sure no more regression happens.   After the developmental assessment we had to go and get her blood drawn again  to check med levels and the ammonia. Poor baby had lots of blood taken from her over the course of two days. Lucky me gets to hold her while she screams and cries through it. (sarcasm) 

Our insurance approved the Specialist in Boston for 6 visits this year so he will be our primary until she gets all straightened out.  We will move the GI stuff up here since we will have to go to a feeding clinic often etc...
I am happy we are moving in the right direction, scared about the surgery (I don't want to see my baby in pain, but I want her to get nourished properly and not aspirate on food) Hoping for uneventful test results. It sort of feels like the Type 1 Diabetes thing again except we get to prep for it. 

Thank God for Scrapbooking club and Kindercamp.  Kailyn was convinced she was too sick to go to school and was fighting with us tooth and nail about not going until I reminded her she would miss her first Scrapbooking club meeting. She stopped the screaming and crying and off to school she went.  Sam LOVES kindercamp so it is very easy to get him out the door.   It also allows me to go to these appointments sans Sam. lol

Keira is still the happy, bubbly, easy going baby that she always has been.  Everyone tells me she should be a baby model and my reply is "We don't have time for that". I'm not sure if they tell all the babies about to get their blood painfully taken from a stranger how pretty they are? I am starting to think they might because it happens so often. lol She was saying Momma again a few days ago (babbling), Dadda constantly and waves and says hi inconsistently again.  If I have her trapped in her car seat I can get her to give me high fives sometimes and she gave me a "so big" once.  Her brain knows what these things are and she wants to do them, but her body won't let her.  She even shakes her head no if she does not want to try.

I am exhausted, but I still have energy to move the sun and the moon for my kids.

We Went to Pumpkinland Today

It was COLD with the wind whipping around and we were on the side of a hill that was wide open with no where to hide from it.  The views of the foliage were beautiful. The kids had a blast and made sure that we did everything.  I had fun watching them filled with excitement.  Keira got to get out when we ate and when we were in the munchkin corn maze. The wind whipped the corn stalks around, but created a wonderful escape from it. We stayed for 3 hours and had to keep our little peanut hidden in her car seat carrier because of the wind. I would have brought her bunting if I had known. She slept for a majority of the time. Here they are having a ton of FUN!!!