Wednesday, November 24, 2010

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.

Monday, November 22, 2010

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


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 ;)

Sunday, November 14, 2010

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.

Saturday, November 13, 2010

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:
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. ;)

Friday, November 5, 2010

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 :)

Thursday, November 4, 2010

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.