Sunday, August 31, 2008

The excitement NEVER ends around here.

We just got home from the ER.(We were there for 3.5 hours) Kailyn is now being treated for Lyme's disease. She had a fever, complained of a sore throat, was acting unusually tired, and just did not look like herself. She actually took a nap (never ever does this) and then I noticed bulls eye rashes on her legs late this afternoon. I called the on call doc and they said that since she had Diabetes we needed to start treatment right away. So its two weeks of antibiotics twice a day for Kailyn now. We will be getting our yard and beyond sprayed for ticks and the kids will be wearing long sleeve clothing and doused in deet from now on. At least Kailyn's was caught really early. It took 5 weeks of misery for them to figure out what was wrong with me.

Sam and Kailyn Went Camping

In the backyard. They were determined to spend the entire night out there. Kailyn has actually been dying to go camping this summer, but when I go camping again, I want to do it like I did when I was growing up. You know, the pop-up RV camper type with electric hookups on each site where there are showers and flushing toilets within short walking distance to your campsite.
Seth's kind of camping is outhouses, bring your own water in and no showers. I can tolerate it for 2 days max, never would be preferable. Of course, I did it when I first met Seth, but when we took Kailyn when she was 1 1/2 and she and I were both miserable we have never done it again.
On Friday I was putting the babies down for a nap. I heard noise downstairs, which meant the other two were up to something, but noise is better then none so I was not too concerned. As people say when it comes to kids. "Fear the silence". When I got downstairs I look out on the deck and see our tent. The kids had smirks on their faces. I let them know that we would set it up tomorrow and they eagerly got to packing. (also known as destroying their rooms and putting all the laundry I had finally gotten caught up on smashed into their bags)
The next day we got the tent set up and the kids got busy making their "campsite"
This is what their set up looked like:

They called the pool their pond/lake, they had a picnic table and made a campfire.

After Bath time, they went into the tent and read their usual books before bed and then it was time to get Kailyn her bedtime snack and insulin. Sam never made it back out to the tent. It was too scary and he was in his bed and asleep by 7:45.
Kailyn was still determined so after her snack out her and Seth went to hunker down for the night. The next thing I know Kailyn is upstairs crying because she wants ME to sleep in the tent. I told her that there were three good reasons that was not going to happen. 1. I don't like to sleep in tents 2. If I slept in the tent I would hurt my back and would not be able to take care of all the kids and 3. I would get a really bad nights sleep and be a really grumpy Mommy. She went back out again with Seth came back in a few minutes later and said it was too scary and wanted to sleep in her own bed. I assured her that I never would have slept in a tent when I was 6 and never did until I was 22. That made her feel better and she fell asleep shortly after that.

Just because they are so cute

My neice Kyleigh got a hair cut yesterday.

My nephew Graham is just too kissable

Friday, August 29, 2008

Blood sugars were within range today :)

I think this is the third time since diagnosis 3.5 weeks ago. I know now that it could mean nothing. But it feels good that she was between 80-160 today.(Seth just took her last reading at 11 pm) Her target range is 80-180. We took out the free am snack and free pm snack carbs.(gave more insulin) We will see if that helps the levels stay in range again tomorrow. Another thing we are wondering is if the pen does not deliver the right dose. I need to call the clinic and make sure we are doing it right. Some insulin seems to drip out of the injection site after we have given her the shot with the pen. It does not seem right. We will use the regular needles all weekend to see what happens.

So, What are we doing today?

Nothing. Its a day off.
No one has school
My baby (Kailyn) is at home so I don't have to worry about her care somewhere else.
No one has speech therapy
No appointments
Kailyn slept until 9:30am (much needed sleep)
When she got up I checked her glucose level 87 :) , Got her breakfast together and calculated the carbs so I would know how many units of insulin to give her. Gave her the insulin and she ate waffles.
Then Sam and Kyleigh decided they needed breakfast again. Oatmeal was the first one, Waffles with Kailyn the second time.
Graham took a two hour nap in the am (rare)
My Laundry is caught up finally!!
Kyleigh and Sam are on their 300th bambaid (band aids) for the day. They were upset to find out the race car ones were all gone.
The kids are using every piece of kid furniture, toys and couch cushions to make houses and playing animal rescuer. My house looks like a tornado, but they are having fun.
Kyleigh has the cutest Walden outfit on today. (a character from her favorite show WOW WOW Wubbzy)
Kailyn got her bathing suit out but is too cold to go in the pool.
Graham pulled up to standing on my couch for the first time today at my house and is having fun crawling through the maze of mess the kids are making.
I of course have to watch this like a hawk.
I am refereeing between the three kids.
Two kids ended up in time out. Hitting and not Sharing.
Now I have to go change a diaper, then make lunch for four kids, check glucose level, measure out carbs and give an insulin shot.

So, this is us doing nothing! :)

Maine walk to Cure Diabetes Progress Report

Still looking for donations for our walk on the 21st of Sept ;) I along with the millions of other families dealing with this disease appreciate any donation big or small to get a cure for our babies!! I appreciate the generous donations I have already received tremendously as well!!
click here if you would like to donate:

Walk for Kailyn

Team Kailyn consists of My Mom Jean, my sister Katie and my sister in law Jayme.

Exciting news is happening right at this moment in research to find a cure. I got this e-mail this am.

The Walk to Cure Diabetes is our most important source of fundraising, accounting for more than 40 percent of the money we raise on an annual basis. Nearly half of this money is raised by type-one families, one dollar at a time.
Based on scientific advances over the recent past, JDRF is looking to fund more research this year than ever before - $195 million, compared with $160 million last year.
We fully recognize that economic issues can impact the ability of individuals to raise money for JDRF. Unfortunately, diseases like type 1 diabetes do not track economic market performance.
The ability to maintain strong momentum in research – to follow up on the progress made in the past few years – can mean the difference between accelerating the discovery of cure therapeutics, or seeing that pace slacken.
Through your involvement with JDRF and the Walk to Cure Diabetes we are one step closer to finding a cure! Check out the article below about the progress of the Artificial Pancreas Project:

Researchers Outline Steps to Artificial Pancreas
This article was published on-line last week by Clinical Endocrinology News, reporting on a July 20-21 conference hosted by JDRF, and the National Institutes of Health and the Food and Drug Administration, identifying next steps in the development of an artificial pancreas. Video presentations by the scientists on the conference program can be viewed at: A full conference report can also be ordered from the link. The JDRF Artificial Pancreas Project has a dedicated webpage at The homepage includes a running log of media reports on the artificial pancreas.

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Thursday, August 28, 2008


Here are three of the Ragamuffins before school. We could not get Graham in the picture because he would have leaped off the porch. He is becoming quite the monkey. My camera apparently had a finger print on it from one of the said Ragamuffins so Kailyn is a little blurry.

This is just Kailyn showing off her Gym day outfit. She will have to wear pants twice a week for Physical Education (Gasp!!) She is getting use to the idea though. She still prefers her dresses!

If your wondering, she had another great day and still loves school. I only got one call from the regular nurse today saying that everything went great at the end of the day.

Wednesday, August 27, 2008

First grade was a hit!!

Kailyn was extremely excited when she got off the bus today because she had a fabulous day. She went to Library, got to eat lunch at school, there was a lot of drawing, writing and she made two friends. (She could not remember their names however) LOL She was also thrilled that she got to see her Kindergarten teacher in the hall.
Mrs Kenny explained to the class about how Kailyn had Diabetes and if she was sick they should tell an adult for her. She also said that the nurse was going to read a special book to explain it better to the class. She tested herself and gave herself shots in the classroom all day. Every time she was tested the nurse would call and confirm that she was giving the correct dose, which was really reassuring. Her numbers were a bit high today, but not too high. Enough to make me relax because she had no hypoglycemic incidents at school. Kailyn keeps saying she feels dizzy and funny, but I think she is actually extremely overwhelmed and overtired. She did not fall asleep until 9:30pm last night and woke up at 6:30am. Her usual is 7:30pm-7:30am.
Mrs.Kenny called to see what Kailyn's perception of the day was like and I reported that she was thrilled.(Because she really was!!! :) ) The only hitch was she did not get enough recess time because she had to eat all her lunch (to cover the insulin) and then had to void on a stick to check for keytones because her levels were high. Kailyn and I decided she would get a smaller lunch tomorrow so that would not be an issue. Its strange getting used to her not eating as much. She eats half of what she was eating now.

SO, today was a nerve wracking day, but we got through it and I am thrilled with the care that she got at school!!

Here are pictures of her getting off the bus.

HI Momma!! I had a great day!!!!

First day of school.

So far so good.
I have had three calls from the nurse, saying that Kailyn was dizzy and her stomach hurt, but her levels were ok (a little high) and she wanted to double check on insulin amounts. I think she is just nervous and the false alarms will stop once she realizes that they are going to take care of her at school. She also does not know all the signs so sometimes I think she just wants to make sure that she is not hypoglycemic when she feels a little off. I hope Kailyn is having a good time. Nanie has been hanging out with us to keep us company. Its nice to have someone one to talk through it. Here are some pics:

I promised Kailyn I would repaint her nails for the first day of school!!

Tuesday, August 26, 2008

They need to change the name "honeymoon" phase

When your child is first diagnosed with diabetes it sounds like a good thing. I thought it meant that her blood sugars would stay stable and everything will be easily managed during that time. Not so. When everyone was talking about it (doctors) they kept saying all the time that it would happen any time now and could go on for weeks even years. I was hoping years (obviously not hoping for that now). I was reading up on everything Type 1 diabetes, but somehow missed this in the literature. Probably figured honeymoon=good so no need to read.
This is what it is:
"What is the "honeymoon phase"?
In a person who has type 1 diabetes, the insulin-producing beta cells in the pancreas are destroyed by immune cells. However, right after the time of diagnosis, some patients go through a "honeymoon phase" in which their existing beta cells still function."
So basically we can change her road map (insulin levels) all the time trying to get her levels right (in the 80-180 range), but until her pancreas decides to shut down we are going to continue to have extreme highs and lows. So, sometimes her pancreas creates insulin and sometimes it does not.
Her levels were 65-316 today. I would rather them be high because I know she won't pass out or seize. The 65 was only once today, but other days we have gone hours with the lows.
Have not found out what they call the phase after the honeymoon?
I plan to send in suggestions for a new name for this phase other than honeymoon. Its quite an oxymoron in my opinion.LOL

JDRF Walk for a cure

I am doing this along with my Mom and Sister. Anyone else that would like to join the team is welcome to as well. Our teams name is Team Kailyn. The walk will take place on September 21, 2008 in Portland Maine at 11am.

Here is a good explanation of why we are doing this:

Why Walk

We would all love to see a cure as soon as possible preferably early in Kailyn's life so that she does not have to deal with the day to day stuff or any complications that may follow.

If you care to donate or join Team Kailyn just click the link and follow the prompts on the following page.

Walk for Kailyn

Saturday, August 23, 2008

Happy Birthday Grammie

The kids made a cake for Grammie this afternoon and had a ton of fun. They also made cards, which is when Sam wrote his name for the first time. I think that is a pretty good birthday present too. What an honor to have Sam write his name for the first time on Grammies card. Maybe she will frame it? LOL They kids LOVE frosting and luckily Kailyn had a free carb snack this afternoon so she got to lick some batter and icing like always.(not the healthiest, but a special treat we are not going to deprive her of) Grammie is not home yet (Something about getting new boots at LL Bean?), but we plan to bring the cake, some balloons and a card over soon. I know she won't read this between now and then. LOL
SO Happy Birthday Grammie!! We LOVE You!!

Update on Sam

First of all he wrote his name all by himself today. S A M. Wholly freaking cow. I have tears in my eyes just writing this. A year ago I thought Sam would be living with us for the rest of his life and every day he makes us feel more and more confident that he IS going to be ok and lead a normal life. He may have his little quirks, but don't we all? Plus, he will be going to the developmental preschool all year to work on his weaknesses.

We went to a Biannual Developmental Pediatrician appointment on Thursday. Last time I left in tears because I had gone in excited to tell the Doctor about all the progress he had made (he has made even more since then) and Sam would not talk or even look at either doctor and made stacks of blocks the whole time. He looked Really autistic at that appointment and I am not even sure if she believed me that he had made the progress I was talking about.

This time I brought Seth and Kailyn with me. I knew he would talk to them and if he did not, at least I would have Seth to back me up with my ravings of progress. If she made me feel depressed then I would have Seth to lean on after the appointment.

Sam did wonderfully showing his skills. He was doing imaginary play with his sister and talked to the doctor a little using great eye contact . (remember last year at this time he could not talk) On the whole way to the appointment I kept telling Sam that he HAD to talk to the Doctor. LOL Overall she was impressed with the language and imaginary play development. He could talk now and was doing things other than just lining things up. He still lines things a lot, does a lot of gibberish, has trouble with transitions, sensory issues that come and go and we are not sure about how he will do with peers this year so she said that the plan we had in place for the upcoming year is what she is recommending. She did say at this rate he may lose the diagnosis, but we still need to monitor him closely and could not promise anything. Lets all cross our fingers that he continues to develop at the rapid rate that he has this year the same as he did the last. :) I am so proud of Sam and am thankful for all the early intervention that he has received!!

Friday, August 22, 2008

Kailyn is testing her own blood glucose levels

and giving herself her own shots. Yesterday I talked about it with her and she was all for pricking her finger to get the glucose levels, but did not think she was ready to give the shots. Well, she set up the monitor and did everything perfectly. Not any help from Seth or I. We read the glucose amount and determined the insulin amount. She then changed her mind and decided she wanted to give herself the shot. She stuck the needle into her leg and counted to five and boom her first time of giving her shot was done. She now wants to do it all the time by herself.

She has not had the opportunity to do it all on her own the past two days though because she has been hypoglycemic most of the day. I called the center yesterday and they gave me bad directions on my answering machine (did not even sound like the right kid) We could not stay home for the call because we had a Developmental Pediatrician appointment for Sam that we had to go to. Seth and I figured out how to keep her levels up overnight, but she was hypoglycemic for 2 hours straight this afternoon. Can you say hectic??? I finally called and left a message saying how disappointed I was that we got horrible directions and that I wanted a call back to get this mess cleared up. The nurse called back within minutes and went over everything with me and gave me much better directions. She apologized profusely for the mix up stating they were very busy yesterday.(I don't care how busy you are I still want the right medication levels for my kid) I told her next time I would just page the Doctor so she probably has a star on my folder warning the nurses I will be a pain in the ass if they are not careful. LOL
She said this was called the honeymoon period because the pancreas is happy about getting insulin so now it is producing very little(if any). As a result, we now have to decrease the amounts of insulin. So, hopefully we will get her levels back up to normal soon and have at least one normal day before her pancreas decides to change its mind again.

Wednesday, August 20, 2008

My Sweet Angel Kailyn

Did well today. We had one really low blood sugar reading of 53, but she was the one that alerted us to it.(her recognizing the signs is REALLY important) She told us she was dizzy and had to sit down. She was putting on a fashion show of her new school clothes and said it must have been too much work.LOL We think it was because she did not drink the apple juice we had given her insulin for.
Nanie came up today, which was a big help. She got to come and see Sam's school, Stayed in the car with Graham and Kyleigh while Kailyn and I ran into the diabetes clinic to get supplies, bought Kailyn new sneakers for school and then watched the kids while I went to Hannaford to get basic foods and my prescription filled. I rarely if EVER take the kids to the store.
Then Kailyn had her hypoglycemic episode so Nanie held Graham so I could take care of that. Things certainly do get hectic around here sometimes and I hope that the Doctors are right that at the three week mark we will be pros. I will call in her blood glucose numbers tomorrow to see if we need to do any medication adjustment.

Sam wrote the letter S tonight

He and his sister were busy making decorations for Sam's upcoming 4th birthday in two weeks. He drew a cake (looked nothing like one, but we will take it) and had Seth write his name on the bottom. Sam then took the marker and made a bunch of S's at the top and then hung the picture on his bulletin board in his room.
He has recognized the letters in his name for a long time (thanks to ABA therapy), but did not want to attempt to write the letters.
Last year Sam did not even have a clue he was going to have a birthday or what one was. This year he knows EXACTLY what it is and can't wait. Keeps asking if it is Today or Sunday. It is going to be a long 2 weeks, but I will smile every time he asks because it will remind me of how far he has come. I can't wait for this year to start and see how he does in both the Developmental preschool and the Regular one.(which is 1/4 down the street) He is very excited about going to the two schools as well. He will do the Regular Preschool on Tuesday and Friday from 9-11 and the Developmental preschool on Monday, Wednesday and Thursday from 9-3.

I guess I have been tagged.

By Heather.
I have never done this before, so here it goes:

8 Things I am Passionate About:

My Health(getting healthier)

8 Books I Have Read and Enjoyed:

Slummy Mummy
Such a Pretty Fat
Skinny Bitch (LOL)
Baby Proof
Poisonwood Bible
Grapes of Wrath
Louder than words
Complete Idiots guide to Puppies

8 Words/Phrases I Say Often:

I Love You
Sam Bam
Graham Bam
Sweet Angel
Be a Nice cousin
Seth can you...
What a great helper you are

8 Things I Want to do Before I Die…:

Travel the world
Be a good photographer
Watch my kids grow up
Be a grandparent
Be able to run 3 miles
See Autism cured
See Diabetes cured
Teach again in some form

8 Things I Learned This Past Year:

My Parents and Inlaws are amazing.
I have an incredible husband.
Life is very unpredicatable
Everything Autism
Almost everything Type 1 Diabetes
I need to take care of myself so that I can take care of everyone else to the best of my ability.

Eight People I want to Tag:

Everyone has already been tagged that I know that has a blog except Erica. So she is getting tagged and that is it. LOL

Tuesday, August 19, 2008

"I wish all food was free food,

then there would not be any diabetes."-Kailyn. Guess the reality of her change in lifestyle is setting in and we need to educate her more about what is going on with her body.

Right now we are only giving her free food (stuff without carbs) for the two hours between the intial carbs and insulin shot.

A good List that dispells diabetes myths.

I have gotten many questions about Kailyns diabetes. Anywhere from people thinking she can't eat sugar anymore to she can just control it by reducing her carbs. Some type II diabetes can be controled with diet, but Kailyn can't. Her pancreas no longer makes insulin. The Endrocrinologist wants her to eat a normal healthy balanced diet like any other child. Same amount of carbs. So here is a list that sums it up in a nutshell:

Myth: Eating too much sugar causes diabetes.
Fact: Type 1 diabetes is caused by a destruction of the insulin-producing cells of the pancreas, which is unrelated to sugar consumption. Type 2 diabetes results from the body's inability to respond to insulin normally Although the tendency to get type 2 diabetes is genetically inherited in most cases, eating too much sugar (or foods with sugar, like candy or regular soda) can cause weight gain, which can increase a person's risk for developing the disease.

Myth: Kids with diabetes can never eat sweets.
Fact: Kids with diabetes can eat a certain amount of sugary food as part of a balanced diet, but they need to control the total amount of carbohydrates they eat, which includes sugary treats. Because sweets provide no real nutritional value other than calories, they should be limited in - but do not have to be eliminated from - the diet. All kids (and adults!) should avoid excessive consumption of foods that provide little nutritional value because this can crowd out healthier foods from a person's diet.

Myth: Children can outgrow diabetes.
Fact: Children do not outgrow diabetes. In type 1 diabetes, the cells of the pancreas that produce insulin are destroyed. Once they're destroyed, they will never make insulin again. Kids with type 1 diabetes will always need to take insulin (until a cure is found). Although kids with type 2 diabetes may see an improvement in their blood sugar levels after puberty or with lifestyle adjustments, they will probably always have a tendency toward having high blood sugar levels, especially if they are physically inactive or gain too much weight.

Myth: Diabetes is contagious.

Fact: Diabetes is not contagious. You can't catch it from another person. Although researchers think that getting type 1 diabetes may be triggered by something in the environment, like a virus, most people who get type 1 diabetes have inherited genes that make them more susceptible to the disease.

Myth: People with diabetes can feel whether their blood sugar levels are high or low.
Fact: Although a person with diabetes may feel physical symptoms (such as extreme thirst, weakness, or fatigue) if blood sugar levels are high or low, the only way to know for sure what blood sugar levels are is to test them. For example, because blood sugar levels have to be very high to cause symptoms, a person who isn't testing regularly may be having blood sugar levels high enough to damage the body without even realizing it.

Myth: All people with diabetes need to take insulin.
Fact: All people with type 1 diabetes have to take insulin injections because their pancreases don't make insulin anymore. Some, but not all, people with type 2 diabetes have to take insulin with or without pills to manage their blood sugar levels.

Myth: Insulin cures diabetes.
Fact: Taking insulin helps manage diabetes, but doesn't cure it. Insulin helps get glucose out of the bloodstream and into the cells, where it can be used for energy. This helps keep blood sugar levels under control, but taking insulin doesn't correct the underlying cause.

Myth: Tablets or pills for diabetes are a form of insulin.
Fact: Diabetes medicines taken by mouth are not a form of insulin. Insulin is a protein that would be broken down or destroyed by the acids and digestive enzymes in the stomach and intestines if swallowed. Currently there is no other practical way to deliver insulin except via injections, although researchers are working on ways to give insulin by mouth, in the nose, or inhaling it into the lungs. Some people with type 2 diabetes take pills or tablets that help the body make more insulin or use the insulin it makes more effectively. But pills for diabetes cannot help kids with type 1 diabetes because they are no longer able to make insulin.

Myth: Kids with diabetes can't exercise.
Fact: Exercise is important for all kids - with or without diabetes! Exercise offers many benefits to kids with diabetes. It helps them manage their weight and prevents them from gaining excess body fat. It also improves cardiovascular health, boosts mood, relieves stress, and helps blood sugar control. Discuss exercise guidelines and blood sugar management with your child's diabetes health care team.

Myth: Low-carbohydrate diets are good for kids with diabetes because they should avoid carbs.
Fact: Carbohydrates (carbs) are the body's preferred source of energy, and carbohydrate-containing foods should provide about 50% to 60% of a person's calories each day. Low-carbohydrate diets tend to be overloaded with protein and fat. Following a high-fat, high-protein diet over the long term may increase the risks of heart and kidney disease in adulthood (and people with diabetes are already at increased risk of heart and kidney disease). People with diabetes should follow a healthy, balanced diet. Usually this means adopting a meal plan that helps them balance carbohydrate intake with medication and exercise to achieve good diabetes control.

Monday, August 18, 2008

Turkeys again

They were in the private way to our house when we got home tonight from Nanie's and Grandpa's. We got to go see Nanie and Grandpa today because Nanie did not have Jury duty so she watched the kids while I went to the doctor. Nanie got to prick Kailyn's blood to check her sugar level and give the insulin for the first time. She was lucky because I showed up when she was trying to figure it out. Kailyn was a little Hypoglycemic and that road map is different. Anyway, about the turkeys, the kids really like looking at them and wish they could get as close to them as they can to Grammie's chickens.(they can pick up the chickens) I don't think that is going to happen.;) I went as slow as I could go, but this is as close as we got.

We went and saw Kailyn's new teacher for this year

What a relief. I had put a call into the school a week ago and left a message with special ed (they draw up the 504's). I had not heard back so I decided to bring all the kids into the school today. I figured if they saw me in person they would figure out that it was important and I meant business. LOL We are always quite a sight so I am sure people were wondering what in the heck we were doing. ;) The school was full of boxes and people getting ready for the new school year.

Anyway, I told the secretaries what was going on and they got right on it. Called the school nurse because she was not there at the moment. They also assured me that the nurse would do wonderfully at taking care of Kailyn. Kailyn got to see her lasts year teacher (and we told her the news) and then we went to her new classroom and saw this years teacher. I had no expectation of seeing anyone but the secretary, but it was a huge bonus to get to see all these other people.
Mrs.Kenney seemed like a really nice person (easy to talk too) and was all smiles. She reminded me of Kailyn's K teacher and Kailyn thrived in that environment so that made me feel good. She did not know much about type 1 diabetes, but said she would google it when she got home and read up on it. I told her that the nurse would have to do all the blood testing and insulin injections, but she would have to watch for the hypoglycemia and may have to give a glucogone pen if she passed out or had a seizure. She said she would do whatever she had to do and it would be ok.
We left after we talked to everyone we needed too and as we did Kyleigh said bye to everyone. They got a kick out of that.

Not 10 minutes had gone by after I got home and I got a call from the school nurse who assured me that she had done this before and that we would come up with a detailed 504 plan. Kailyn will be the only one with type 1 diabetes in the school this year (out of around 350 kids), but they have had them in the past. Mom told me that she read on that net that 1 in every 800 kid has type 1 diabetes.
So, we are very happy now that we have gotten the ball rolling on her school plan. The meeting is set for August 25. We really want her to go and have a great first day of first grade. It sounds like the school is willing to do whatever it takes to make this happen. YAY! :)

Went to China

Lake again on Sunday. Seth's Cousins on Grammie's side are in the State (from New Jersey) and Kailyn was finally well enough (no fevers) to go and do something. They had a great day. Got to eat clams and lobsters, frolic in the water with their cousins, demand piggie back rides and kick their new soccer balls around. They had all sorts of floatation devices hooked up in the lake and it looked like a three ring circus out there. I kept wondering what other people were thinking when they went by? LOL It was a harder day on me for some reason. Maybe because it was the first time going and doing something out of the house for an extended time?? That and some unpredictable things were thrown at us and we had to try and predict the right insulin levels. We did not do that well predicting so she ended up low. Her sugar levels have been all over the place again since my post saying they stayed within range, but more hypoglycemia than high levels. We think she is starting to recognize the signs though. She says she is dizzy and when we check she is 60-75 and we follow our Hypoglycemia road map, which we are still learning.
All in all in was great though to get out and see my kids have a great time doing what they love. I always love watching the smiles on their faces and it reminded us that this disease will not prevent her from doing anything. It is just going to take us some time getting used to it. On the way home we saw a TON of hot air balloons. There was a festival going on in one of the cities in Maine. I am not sure if the kids have even seen them before. They were screaming with excitement,counting them
and were bummed when they went out of site.
Here are some pics from the day

Grammie bringing them out in the raft. They actually BOTH swam all the way out and back after they had been brought in the float. (JT swam next to them)

They are the two little ones in the yellow life jackets with their backs to the camera.

Robbie pushed his mom Roberta into the lake when she was trying to get on the raft. Kailyn and Robbie thought it was hysterical and she did not. LOL

Saturday, August 16, 2008

Woohooo!! Blood sugars within range today.

I should probably knock on wood, but Kailyn's blood sugar levels were all within her target range of 80-180 today. The first day since her diagnosis. This does not mean that it will be like this all the time, but it feels good to know that it can be done. She still has a fever and appears to have a cold and Sam was extra clingy today too (may be coming down with the same thing too). BUT, we are very happy about the sugar levels nonetheless. Now all we have to do is get rid of these viruses and get ourselves back into our routine and all will feel normal again at the Robie household.
Tomorrow we hope to head to China Lake if everyone is healthy enough.

Friday, August 15, 2008

Blood sugars Ok again today

Still not within range, but no hypoglycemia so we are ok with that. I am sure that eventually we will get the numbers within the range. (with help from the doctor).
We made it to the last night of soccer camp (barely) Kailyn has a fever still and we are alternating motrin and tylenol to keep it down. (we also have to check her urine for keytones when she is ill or blood sugars are above a certain number) She really wanted to go and at least watch and if she felt well enough she would participate. Well, part way through her fever broke so she had the energy to go out and do the rest of soccer camp. That made both Kailyn and Mommy happy. When we got home from the camp her blood sugar was right where it should be so we predicted the amount of insulin to give right too. I hope this illness/fever thing goes away soon. We may be making an extra trip into the doctor if it does not because it has gone on for a week now (which is too long on my Mommy radar)
Tonight I am starting to worry about what is going to happen when she starts school.(only 12 days from now) I have not heard back from them and we want to get a 504 plan together as soon as possible. We want her monitored closely at first because she does not recognize the symptoms of hypoglycemia yet. Hopefully I can meet with the school nurse soon. I hope she will have experience with this and will be able to calm my anxiety about that. Seth said he will go to the school every day and threaten legal action if he has too.LOL (He knows all about 504's because of his job) Our goal is to let her go off to school on the first day like any other first grader without Mom or Dad tagging along because there is no plan in place. We just want things as normal as possible.
Also anxious about Sam starting regular preschool. I know he will do well, but he is still not great with transitions so hopefully he will just let us drop him off and go.

Thursday, August 14, 2008

A few funny/ happy moments from today

Kyleigh always makes me laugh especially since her language is blossoming and she comes out with new things every day.
Today I was laying with her to get her to go to sleep for her nap and Graham was in the pack n play being relatively quiet and almost getting ready to sleep. Kyleigh said to me "Graham loud, he annoying me" I am chuckling even just typing it.LOL She said it twice and I did all I could so she would not see me laugh. She kept hearing the kids downstairs too and would say. "I be right back" Meaning, I am leaving because I hear the kids playing and I don't want to take a nap.

I read Sam his books before bed tonight he picked out "I Spy" and "Brown Bear Brown Bear". He was able to find all the items in the books without help and got almost all the animals and the right colors. I am in still in shock every day with how rapidly his development is coming along now. Last year at this time he could not talk.

Kailyn apparently wanted to talk about some deep stuff tonight when I was laying with her before she went to bed. First she asked me if we had tornado's in Maine,(they had one in NH recently so I think this sort of worries her) then she asked how they were formed. I told her I did not know and we would have to get a book from the library to find out. Then she went on to explain that she saw a book in the library that showed how monkies turned into people over time. (Evolution I am assuming) This was from a child that was extremely overtired. I told her we could talk about creationism and evolution at another time. LOL She finally passed out around 8pm.

Today Graham and I worked on eating saltine crackers. He got more crackers on him than in him, but boy did he have a great time. He refused to let me help him eat them and wanted to do it all on his own. I HAD to help him though because he would take too big of bites. When I did this he would yell at me. LOL He was quite a mess when he was done.
So pretty much a good day all in all. :)

Things went great today

Kailyns blood sugars were stable all day. She was between 98-248 so a little higher than her target range, but we will take it. No hypoglycemia, which made us very happy. We realized that the breakfast insulin was miscalculated (figured it out today while I was thinking more clearly), which brings home the point that it is REALLY important to get things right.
We did miss soccer camp tonight though. Kailyn had a fever and a sore throat and was exhausted.(left over from the virus from the weekend??) Of course she perked up once the motrin kicked in, but we still got her to sleep much earlier than she has the past few nights. She seemed really sluggish at camp yesterday anyway. The camp has been keeping the kids up 1.5 hours past their usual bedtime. Sam was out cold by 6:30pm tonight. Hopefully we will make it to soccer tomorrow night, which is the last one.
I signed them both up for fall soccer today and they are both really excited about that.

Wednesday, August 13, 2008

Hypoglycemia and Diabetes

Today was the first time Kailyn had Hypoglycemia and it upset me tremendously. We had great blood sugar levels yesterday so I thought we were starting to get a hang of things. She is supposed to be between 80-180 and her levels ran anywhere from 45-388.The high blood sugars with negative keytones (protein not in the urine) were fine with me, but the Hypoglycemia scares me to death. Her blood sugar levels were all over the place today and two times they were too low to my liking. We quickly got it up to the level that it should be, but now we have to be super vigilant to make sure that she does not pass out and need her glucogone (a fast acting shot of glucose, sort of like an epi-pen) or have a seizure. These are the really stinky parts of Diabetes that I am soooo not looking forward too. Hopefully she will start to recognize the signs too so that would be a help. I know I will get used to it and won't worry as much some day, but right now I am very anxious. We are still both mourning the fact that Kailyn has to deal with this and has a special need. Of course, she is doing great, back to herself and had a grand time with a lemonade stand and camp today.(She made over $2) We are the ones that are still a wreck ;) Seth and I will get up at 12am and 3am to make sure that her glucose levels are ok. Unfortunately, Seth now has a temp of 103 (probably getting what everyone else had over the weekend) so it may be me doing the early morning checks.

Pics from soccer camp

The kids are still LOVING camp and can't wait to go every day. I just found out that the rec department will have soccer for Sam's age group so we will be signing him up for that this fall too.
The schedule is hectic for us because the kids are up past their bedtime every night (7:30), but it has been so good to get back into doing normal activities for them both. It gives us a chance to figure out if we are giving the right amount of insulin to cover the increased activity level and a chance to get out and do something different. Here are the pics I took the other day.

Sam playing the "I I captain game"

Tuesday, August 12, 2008

Soccer Camp Excitement

Both kids are doing a soccer camp from 6-7:30 pm with a British company every night this week. I have to wash and dry the outfit they wear every day because we were not going to spend any more money than we had to on this because like I said, it only lasts a week.

Anyway, they have been bugging me for their uniforms since noon time to put on. They are now finally out back in full gear playing soccer with their Daddy and it is only 3pm. We will take the shirts off for dinner so they won't get ruined before camp.

The first evening of camp went perfectly. Sam did awesome. He blended in with all the other three year olds and was able to follow most directions and followed the cues from the other kids if he did not know what the instructions were. There was one moment when my heart sank because the instructors told the kids not to listen to them during a game and if they did they would have to go back to the beginning. Sam did not understand this and the coach asked him to give her five and he did so she sent him back to the beginning. The great part about him not understanding was that it did not phase him when he went back to the starting line. It hurt Mommy more than him. LOL
Kailyn did not pass out from low blood sugar levels (this worries me the most in regards to her having diabetes). This of course is a worst case scenerio, but I was still worried about it (because that is what Mommies do) She has not done this much activity since her diagnosis and we were worried about giving her the right amount of insulin at dinner to cover all the extra activity. We brought Grandpa Jock along to keep an eye on Kailyn at all times. That way Seth and I could go between both kids and watch them both. He did a great job (Thank you Grandpa), but now we feel confident that we can do it alone tonight. I will post pictures later. My battery on my camera died right when we got at the field yesterday so I did not get any pictures.

Sunday, August 10, 2008

Pictures of our Kids

I took some pictures tonight to show how good Kailyn looks. They are both feeling a lot better today. They went to the park with Daddy, into the pool and drove their Gator around the yard for fun. Great Nana came for a short visit as well. Mommy got to take a very much needed four hour nap and then took a 3 mile walk to try and get things back to normal. (I try to walk 5 times a week 3 miles after dinner) Now Seth is about to take his late night run after a busy day.

Saturday, August 9, 2008

I almost forgot

Dr. Jerry took a picture of Kailyn right after we got there. He wanted to show us how her face would fill out immediately once she got treatment going. He was right. Below is a picture of my precious angel and her very shocked Momma. Dr. Jerry took this on his Blackberry after we had been in the ER for about an hour. I will take a picture tomorrow to compare what her face looks like now.

Friday, August 8, 2008

And there you have it

I have caught everything up that has gone on during the last few weeks (not in order) and feel better. It helps me to do this and take my mind off of other things. Plus I think my kids are adorable and I love to brag about them ;) If things are mispelled or don't make sense I will come back and fix it when my brain is working at 100%.

My Sam Bam is crying now because he hurts so much from the hand foot and mouth disease that all four kids(and Katie) have gotten so I need to go and snuggle with him now.

Story Land

We went last Friday (August 1) and had a BLAST! It is nestled right in the middle of New Hampshire's White mountains and is only 1.5 hours away from us. This was the first time that both kids could go on all the rides (height requirements) so it made the day much easier. It was also great that Sam understood everything that we were doing, could talk about it and ask to do things. I did not bring my camera in because I did not want to get it wet and I wanted to do all the rides with the kids. The picture above is the only one we got and it was at the end of the day. They both got their faces painted, driver's licences done (Storyland style of course) and one toy as a keepsake. Daddy bribed them with the toy so that they would not whine about going on the turtle ride. Last year that ride made him sick and neither of us wanted to take that chance again.


We have quite a few that come through our yard every day. The kids LOVE to look at them and count all the baby turkeys. We don't feed them, but they still love our yard for some reason. The only problem is that our little Miley has a bit of retriever in her and has killed two of the birds. :( But, as my MIL says, "that's what dogs do." At this point the kids don't realize that the amount of baby turkies has dwindled from 11 to 9 because of their precious doggie. Below is a picture of the 30 pound beast and the turkies of course.

Graham's First Cheerios at Diti's house.

We were outside watching Grandpa Jock level the ground where the pool would be going on a cloudy day. Graham got hungry so I decided to bring his high chair out on the deck to give him a snack. (Kyleigh calls the high chair "in a minute") He had a blast. Below are pictures of him in all his glory.

He also just started sitting up all by himself and it won't be long before he is crawling. Time is flying as it does with each child.
I did not want to leave Kyleigh out so here is a picture of her on that day too. Of course she would not smile because she can be a little poop sometimes.

Kailyn decided she would help grandpa level the ground for the pool. I had already put it up and taken it down twice before I called in the big guns (Grandpa) for help. The pool is now perfectly level and should stay that way until September when we take it down. Below is a picture of Kailyn working on the final resting place for the pool. I have to replant grass in the other area.

We are home from the hospital!!

We are thrilled about that, however things are hectic and it is hard trying to figure out how to manage this disease. We want to do things perfectly and it is not a perfect science. On top of the diabetes both kids have hand, foot and mouth disease, which is making Sam absolutely miserable. It is difficult to gage what Kailyn will be eating when she feels ill too so giving the insulin accordingly is tricky. Treating diabetes sounds easy in theory; prick a finger five times a day and give a shot 5 times, but it is way more complicated than that. We hope to have this all sort of figured out by the end of the weekend so things won't be too hectic when I have all the kids alone. I think we also need a day of rest at home so that we can start to think more clearly.

Its hard to come to terms with the fact that your child has a chronic condition and will have it for the rest of her life. We always took solace in knowing that we produced one child that was not going to have special needs so that was sort of a kick in the gut. But, on the bright side we know that it will get better as we get used to it. (at least the doctor told us this) She is still the same bright, bubbly and happy little girl that she always was. Also, Sam continues to amaze us all the time as well and we are starting to feel like he will be ok. Kailyn is feeling so much better now that her body is converting her food to fuel correctly.

Kailyn was sad because her vacation at the hospital ended today. The Barbara Bush children's Hospital makes the kids feel like they are in a resort. They had a circus come while we were there. A play room with any craft project that you could dream of. All the DVD's in the world and presents for her at every corner.
She rode home with my Mom after we stopped at TRU (To get more toys that we had bribed her with) and said "Well, I guess my vacation is over" LOL

Now I need to talk about Doctor Jerry. Kailyn's Pediatric Endocrinologist. He was amazing and knows his stuff. He spent so much time with us and we could not have asked for a better doctor. He is a Nut (quite the character), but he makes you laugh and feel quite confident that everything will be ok by the time you leave the hospital. Kailyn would not talk to him. She played shy with a lot of the staff. Below is a picture of them that shows exactly the relationship they have and the face Kailyn always made when he was around. We feel very blessed to have received such a wonderful doctor.

Which takes me to my last thought. We are very blessed to have such supportive parents. We would not know what we would do without our Grammie, Nanie and two Grandpa's. We appreciate everything they do for us and love them more than words can say.

Type I diabetes

This is the BIGGEST change in our life since my last entry. On Tuesday August 5, 2008 I took Kailyn to the doctor because she had been having a stomach ache for weeks. The night before it seemed to have gotten worse. She was crying about it and had not done that before, so I decided it was time to get it checked out. I was chalking the stomach aches up to nerves about first grade (which she talks about all the time) or just growing pains. During this time she was also eating a TON. She was ravenous all the time and cranky because of it. I figured this was because of an impending growth spurt. She wet the bed a few times in the last few weeks too, but I thought it might be a result of the virus I thought she had. Her urinating had increased quite a bit, but her brother goes so often this did not ring a bell for some reason either. Not odd for this family to have to stop 4 times to go the bathroom on the side of the road for a one hour trip. During all this time she started to look skinnier and skinnier. Her bathing suits were drooping off of her and the size 6 clothing we bought for the next school year were WAY too big. I did not understand this because she was 46 pounds which was within the limit for 46-51 pounds that a size 6 was for. (little did I know that she was only 43 pounds)

We had a routine exam at the doctors office. She had a yeast infection (her first ever), a three pound weight loss since May and we thought her stomach aches might be reflux. The doctor thought this might be all stuff left over from the virus we thought she had a few weeks ago. She had some cold sores in and around her mouth a few weeks ago, which is why I thought she had had a virus. He told us to get cream for the yeast and mylanta for the stomach aches and to come back into the office in two weeks for a weight check. If she had not gained weight in that time they would do testing.
On our way out the door he stopped us and said that he decided we should do a urine test and wondered if we could get a sample. We could not because Kailyn had gone before so we decided we would get the next sample and bring it back to the office before 5.(when they closed)

It did not take long to get the sample. We went to get Sam at Grammie and Grandpa's and she had to go then. We went and brought the sample and then went to Rite Aid to get the cream for the yeast and the mylanta. It seemed like we were in Rite Aid forever because Kailyn had to pee twice and so did Sam (Sam constantly has to go to the bathroom). When we got out of Rite Aid I looked at my phone and noticed I had 6 missed calls. One of them being the Doctor's office. I promptly dialed their number told them who I was and they said they would get the doctor right away. (That immediately put a lump in my throat)
He got on the phone and said something I will never forget. "I hate to tell you this on the phone because I like to tell people this face to face, but Kailyn has diabetes and you need to go to the ER at Maine Med immediately" He let us know that the Pediatric Endocrinologist was waiting for us and to get their as quickly as possible. The whole time I knew it was an emergency, but I was still hopeful that there was a mistake and the endocrinologist would tell us otherwise. WELL, he did not.
When we got to the ER the Endocrinologist was waiting there. He rushed us through admitting and helped us during triage. When the nurse was asking us why we were there I was giving her all her symptoms and Dr Jerry (the endocrinologist) pipes in and said."and she has type I diabetes" Right then I finally realized it was true and our life was going to change forever.

Its been a while

A lot has gone on in our lives in the past few weeks and I have not had the opportunity to post much. Between myself and Kailyn not feeling well it has been hard to keep up. I am going to post a bunch of entries that won't be in the order that they may have happened, but I am sure you are all smart enough to figure it out. ;)

ps: I am a little tired so some of this may not make sense, but I will go back and edit my faux paux's later.