Monday, January 28, 2013

New home

We finally made up our minds about staying in Texas. We've been struggling with this decision for awhile as some of you know. In the end we decided that staying here is the best decision for our family.

Today we signed a contract to have a new home built in the area.
We are very excited about this home for our family. It's a 2 story, 5 bedroom home with plenty of space for the 6 of us and guests. :) We opted to make the downstairs study into a bedroom with a full bath, as well as adding a media room above the garage. See pictures below. The house will be finished sometime in June.

Here's a link to a virtual tour of a model home with the same floor plan:

Sunday, January 27, 2013

Follow up appointment and sick day

This Wednesday afternoon Lily had her first follow up with her Endocrinologist at Childrens Medical Center.

We started off the day with her getting sick with a stomach ache and vomiting (just once) and for the first time we got to experience a severe low in blood sugars. I just decided to test her 20 minutes after vomiting (even though she was feeling fine at this point) because we need to know how her body reacts in situations like this. Her blood glucose was at 39! Anything below 70 needs to be treated as a low (treated with 15 g fast acting carbs/sugars) and anything below 40 is considered an emergency. When she saw the reading she commented that she was in fact feeling a little shaky, I was probably even more shaky at that point....getting the glucose tabs and praying that she'd be able to keep them down since her stomach was upset. Luckily she kept it down and 15 minutes later she was up to 116. After that I called the diabetes clinic for instructions. We moved to giving her the insulin injections after meals to be able to see how much she would eat and calculate her insulin accordingly as well as make sure she'd be able to keep the food down. Giving her insulin and then her not being able to eat would not be good and probably cause a severe low. I also called her peditrician and asked for a prescription of Zofran to be called in for her. This is an anti nausea and anti vomiting medication that the diabetes clinic recommends, in fact it is the same medication that I took when I was pregnant.
Luckily she recovered very quickly and didn't have any more vomiting. We never had to use the medication but at least now we have it on hand for the future.

Late that afternoon, at 4:40pm, we had our follow up appointment with our Endocrinologist. Our Dr usually works in downtown but every Wednesday she's at the Plano campus. Normally she doesn't see anyone at 4:40 but she books up quickly and to help us out so we didn't have to go to downtown she added us at the end of her day. We didn't know she did that until we got there and realized the place was almost empty. I thought that was really nice of her.

She was pleased with how Lily is doing. One thing they will do at every appointment is an A1C test, it's a simple blood test (finger poke) where they measure her average blood sugars over the past 3 months. A normal A1C for people without diabetes is between 4-5.6% and the goal for people with diabetes is below 7%. When Lily was admitted to the hospital her A1C was 12.3% (the test only go up to 14% but it's not uncommon for people to test at 14% when first diagnosed), 12% means her average blood glucose was 300mg/dl (16.7 mmol/l). Today her A1C was 9.9% meaning an average of 240mg/dl (13.3mmol/l). Considering it's only been a month since diagnosis and the test goes back over 3 months the Dr was very pleased with this. Hopefully by our next appointment in 2 months her number will be closer to 7% (if not below).
While at the hospital they had done a series of tests on her, checking for antibodies to confirm type 1 diabetes and checking for other auto immune diseases. This test formally confirmed what we already knew, that she has type 1 diabetes. Her test also came back with elevated antibodies for her thyroid (sköldkörteln) so now she has to do some additional blood work to make sure her thyroid is working properly. Having antibodies doesn't necessarily mean there's a problem but she's at an elevated risk and will probably need to be tested regularly. If there's a problem it would mean thyroid medication.
We're going to the lab for this next week.

Her next appointment is at the end of March and from then on it will be every 3 months.

Wednesday, January 16, 2013

Diabetes 101 class

Today we had our first diabetes class back at the Childrens Medical Center. It was an all day class from 8:45am to 4pm and Lily came along. Because we had to leave early Maddie spent the night with her best friend and also got to go home with her in the afternoon and the boys spent the day with our good friends Fredrik and Brenda.

We didn't learn that many new things today, especially since we've done a lot of reading on our own since diagnosis, but it was nice to get a refresher and some of the new things we learned will be very useful. We did, for example, learn some tips on managing diabetes while ill and how to adjust the amount of insulin when more active than usual.

The highlight of the day though was going home with an insulin pen! By tomorrow or Friday we will get our insulin cartridges and needles from our pharmacy and we will be able to start using it instead of the syringes. This is especially convenient because we won't have to measure the insulin from vials, with the pen you just dial in the amount of insulin needed. Each cartridge of insulin that goes into the pen has 300 units of insulin and we use anywhere between 6.5-10 units each time (3 times a day) so a cartridge will last 7-10 days. Another convenience is the fact that the pen does not need to be refrigerated like the insulin vials do so it will be much easier when out and about. It'll take some getting used to since the technique will be different than with the syringe but hopefully Lily likes it. The pen is only for her rapid acting insulin (Humalog) though so her long acting insulin (Lantus) still has to be taken by syringe.

This is what the pen looks like.We got two of them so one can be kept at school.

We briefly talked about insulin pumps and that will definitely be in our future. Most of the time they like to wait a year after being diagnosed before going on a pump but we will talk to the Dr about it at our follow up appointment in February, maybe they are open to starting a little sooner.

Friday, January 11, 2013

504 meeting

This morning Lily and I had a meeting at school to set up her 504 plan. The meeting included the principal, the vice principal, the counselor, the nurse and all 5 of the 4th grade teachers. The nurse was very helpful in guiding everyone to what needs to be in the plan for Lily medically. Things like how she needs to be allowed any snack and bathroom breaks, how someone needs to follow her to the nurse if she feels low, how she will be given extra time to finish a test if she has to take a break, how one of the trained diabetes care assistants need to accompany any field trips if Michael or I can not go along etc.

The school right now has 5 UDCA's (unlicensed diabetes care assistants). It includes the PE coach, all 5th grade teachers and one 3rd grade teacher. This is because they had a 5th grade student with diabetes last year and this year they have a 3rd grade student. Lily's homeroom teacher was asked to also become a UDCA, this involves a 3 hour long online course and 1 hour of practical training with the nurse. Lily's homeroom teacher was on board with this and all the other 4th grade teachers stepped up and said they wanted to do the training as well. Then the principal asked to be signed up as well because she felt that someone in the administration should be trained. That was just a wonderful feeling to have so many people wanting to help. The lead 4th grade teacher even has a younger brother with type 1 diabetes so he had a lot of knowledge about the disease.

It was just a great meeting and everyone at school are so helpful and supportive.

It also turns out that the little boy in 3rd grade that has diabetes has an older brother in Lily's homeroom class. The nurse talked to his mom and asked her if she would be willing to talk with me and so she gave the nurse her cell number to give to me. We are so lucky to be surrounded with such supportive people and great resources!

Thursday, January 10, 2013

Preschool issues

As of December last year we decided to withdraw the boys from their preschool. The teachers were having communication issues with the boys, they could only understand very little of what they were saying. This was very surprising to us since they are able to communicate in English very well with other people.

One of the teachers just didn't have a caring or loving personality and the boys were very uncomfortable around her. We think this made them very reserved and quiet. The teachers also assumed that the boys didn't understand English very well and things were said about them in their presence that was just unacceptable. The boys once asked me if they "talk weird" saying that their teachers think so.  We were not willing to keep them in that environment anymore, worrying that it would hurt their self esteem and make them hold back more in communicating.

The teachers and the school director recommended for us to get the boys evaluated for speech with the school district. We made an appointment and had our first meeting on December 19th. It was quickly determined that the boys did not qualify for any speech services or services due to disabilities. They did however suggest that we could have them tested for a program for kids with English as a second language (ESL). We had that evaluation today and neither boys qualified. It was determined that they are fluent in English and their language skills are comparable to any other child their age!

We are glad that they are not in need of their services, even though it would have been a free program, and we are even more upset with the situation we encountered at the preschool. The results from their evaluation just shows how poorly the teachers at the preschool were handling the situation. Now we're back to square one looking for a new school. Hoping for better luck this time around!

Wednesday, January 9, 2013

Back to school

Lily's first day back went really well. I did get a call from the nurse on my cell phone by 11am, I've got the nurse in my contacts so caller ID showed it was her and I got a little nervous for a minute. Turned out that Lily had come down mid morning to get her blood sugars checked because she was feeling a little anxious. Her blood glucose turned out to be really high, 343ml/dl (that's about 19 in European measurement of mmol/l). Ketones were negative however and she just had some extra water to drink. By lunch it was down to 231 so it got better. Our goal range right now is 80-180, so still a little high but she's been running high most of the time since diagnosis. The rest of the day was uneventful.

Lily's only complaint this afternoon was that all her teachers kept asking her if she was feeling ok. She has 4 different teachers every day and they were all keeping an extra eye on her. Between all of them and our school nurse I feel confident she is in good hands at school.

Tuesday, January 8, 2013

Meeting with the school nurse

Lily and I had a 2 hour long meeting and chat with the school nurse this morning in preparation for Lily's return to school. We talked about Lily and her medical care, about different situations at school and the nurse's previous experience with students that have diabetes among other things. The nurse seems wonderful and I think we will work very well together.

For now Lily will be seeing the nurse every day before lunch to check her blood glucose and get her insulin injection. She will need to leave recess a little early so her time eating lunch won't be cut into. Since she's on a fixed carb diet we will pack her lunch to make things easier.

She will also see the nurse anytime she feels that she needs to check her blood glucose. She will be able to keep extra snacks and "free snacks" in the nurse's refrigerator so she can stop by any time she gets hungry before lunch. This is great because Lily doesn't eat lunch until 1pm and that's really late when you eat breakfast at 7am. Her regular snack time at school is at 10am. Last year she used to bring 2 snacks for 10am but now she's only allowed 15g carbs for snack so she will have to supplement with what they call "free snacks". A free snack is anything that has less than 5g carbs per serving, so for example string cheese, eggs, 1 cup popcorn or sugar free jello.

On Friday we have a meeting with all of Lily's teachers, the principal, the nurse and the counselor to set up a 504 plan for Lily. A 504 plan is a plan for special accommodations for students with "disabilities". Things like, if Lily's blood sugars are high or low when it's time for a test she's allowed to take the test at a different time without penalty, or that she is allowed to leave the classroom at any time she needs to check her blood glucose, have snack or a drink of water etc.

I also found out today that besides the nurse they have 5 other teachers at school that have received special training when it comes to diabetes and giving injections etc. They would know how to administer the Glucagon emergency injection in case the nurse was unavailable at the time etc. The nurse said, though, that any time she is absent the school has to have an actual nurse as a substitute so there should always be a nurse available. She is not allowed to leave school for field trips however and in such instance it's good to have a trained teacher go along, if not Michael or I can go with.

We now have all her medical supplies in place with the nurse and the necessary paperwork filled out so by tomorrow Lily is ready to go back to school. It'll be good to get back into every day routines.

Monday, January 7, 2013

Type 1 diabetes vs type 2

So, as I have gotten to know more people in the diabetic community I have come to learn that there is a lot of uninformed people out there when it comes to Type 1 diabetes (not in the diabetic community per say but from the stories they have told). I realize that this is because type 2 is much more common nowadays with our sedentary lifestyles and weight issues but it does upset me that people would think our daughter has type 2 diabetes. I just can't stand the thought that people would make judgements about her or us, that she would get comments regarding her lifestyle or eating habits causing her diabetes etc. I know that most people, if not all, reading our blog are well informed about type 1 diabetes but in the odd chance that someone I don't know is reading and is not I'll explain it.

Type 1 diabetes is an autoimmune disease formerly called juvenile diabetes because it's most often diagnosed in children, teenagers and young adults. Type 1 diabetes happens when your body's own immune system attack the insulin making cells in the pancreas and thus the body stops producing insulin. As the Dr's described it to Lily at the hospital, insulin is the key to the door of our cells that makes it possible for glucose to enter our cells and be used for energy in the body. When the body stops producing insulin you become dependent on insulin through injections. Nobody knows exactly what causes type 1 diabetes but scientists believe that some people have a predisposition for it and then something in the environment (like a virus) triggers it. Type 1 diabetes can not be prevented and it can not be reversed.

Type 2 diabetes is different in that the body still produces insulin but the insulin doesn't do it's job well in the body. Most people who have type 2 are overweight. It is also tends to run in families but can be avoided by eating healthy and exercising regularly. Some of it's effects can also be reversed by loosing weight and changing habits etc.

I'm certainly no expert when it comes diabetes, yet, but there is a big difference in the 2 types and I certainly don't want Lily's disease to be confused as type 2.

There's also a type 1.5 diabetes or LADA (latent autoimmune diabetes) but I don't know much about it so you have to google it if you want more information.

Sunday, January 6, 2013

Lily's daily routine

Here's what a day looks like in Lily's life.

After she wakes up we check her blood glucose level. We do this using a finger pricker and a blood glucose monitor. Then we calculate her insulin dosage depending on her blood glucose at that time and give her the injection. Before we actually give the injection we plan what she wants to eat for breakfast and we count the carbohydrates, she is allowed 55-60g carbs with every meal. As soon as the insulin has been injected she needs to start eating as soon as possible so it's important to prepare as much as possible beforehand.

Depending on what time she has breakfast she may have a mid morning snack, this will definitely be the case when in school. Her snacks are supposed to be 15g carbs.

Before lunch we need to check her blood glucose again. Then we count carbs and measure her lunch before injecting her insulin, dosage again depending on her blood glucose level at the time.

She's allowed another 15 g carb snack in the afternoon.

At dinner we check her blood glucose again and give her insulin, same procedure at every meal. ;).

At 9PM we do her final blood glucose test for the day. At this time we give her a different insulin, it's called Lantus and is a long acting insulin that stretches over 24 hours. The other insulin is short acting and covers her meals. If her blood glucose is higher than 200 she needs a correction dose of the short acting insulin and this means 2 shots.

Before bedtime she has to have another snack of 15g carbs and some protein to prevent her blood glucose from getting too low over night. While the other snacks are optional the bedtime snack is required.

So far we've also been checking her blood glucose at 3AM. This will not be necessary forever but because we are still adjusting her insulin dosage in order to get her blood glucose within desired range we still check her.

She also needs to watch for any lows or highs during the day and test her blood glucose as needed. If at any time it is below 70 she needs to treat it with 15grams of fast acting carbs, then wait 15 minutes and test again to make sure her blood glucose has gone up. It's called "the rule of 15" because you treat with 15g carbs and wait 15 minutes. High's don't need to be treated with more insulin but if she's above 250 she needs to test her urine for Ketones. If Ketones are present she needs to treat it by drinking a lot of water and try to flush it out. Moderate to large Ketones in the urine is considered an emergency and can lead to DKA (diabetic ketoacidosis) within hours.

At this time our schedule is pretty strict but eventually we will learn to adjust her insulin depending on what she eats etc so it will be possible to eat out or having dessert and such.

Right now we are preparing for her to go back to school. Before sending her back we plan to meet with the nurse and set up a care plan for her. I have prepared a box with all her medical supplies and some smaller boxes to keep in her classrooms with some snacks and supplies to treat an emergency low. It's a lot of supplies to get organized.

Supplies for school.

Our tub for discarding syringes. This is the amount of shots our little girl has had to take in the last 10 days.

Diabetes diagnosis

Two weeks ago today Lily was diagnosed with diabetes. December 23rd, it is a day we will never forget.

She was feeling tired and weak that afternoon, she developed a head ache and her mouth was dry. A couple of days prior Michael had commented on the fact that she had been waking up at night, every night, to drink water and Natalie told me that she would wake up feeling like her mouth was a desert. I immediately thought of diabetes and decided I needed to take her to the kids urgent care to make sure she didn't have it.

The urgent care was unusually busy that afternoon and we waited an hour to be seen. Lily was getting more tired and felt more sick by the minute. When we finally got in to see the Dr she had developed a stomach ache and mild nausea. The Dr ordered a urine test and a quick blood glucose test. Her blood glucose came back at 269 and considering she had not had anything to eat in 4 hours I knew this was high. We kept waiting on the urine test and the Dr finally came back with the results. She said Lily had large Ketones in her urine and Lily was in DKA (diabetic ketoacidosis), this told her that Lily indeed had diabetes. I was so not prepared for the diagnosis and reality hit hard when I saw the Dr had tears in her eyes.

We were told to immediately go to Childrens Medical Center in Dallas where Lily would be admitted. She was not allowed to have anything to drink or eat from then on. By 9pm we walked into the ER at CMC. They were incredibly busy, sick people everywhere. Lily was miserable at this point, her head hurt, her stomach hurt and she was incredibly thirsty. We were put in a priority waiting room and it took 2 hours before they had a bed for her in the ER. As soon as we got there they started working on her. Because she was so dehydrated they had a very difficult time getting an IV started. After about 3 tries they finally got one in her right hand. After a lot of blood was drawn for testing they started her on IV fluids and medication. Some of the medication were very strong and caused Lily some pain in her hand and arm. She was given a warm pack to help alleviate the pain. Shortly thereafter they needed to put another IV in for the blood work they had to do every hour or so. 3 tries later the nurse had to call the head nurse for help. He was eventually able to get another IV in her left hand. Both IV's were causing her some pain, poor girl. All night she kept begging for water to drink but they would not allow her anything other than water to rinse her mouth.

By 5 am we were transferred to a room on the general floor. It was a lot of activity going on that morning, blood tests every 2 hours, temperature checks, blood pressure checks etc. Nurses changing shifts and several Dr's stopping by to see us and talk to us. By early morning the IV for blood work failed. The nurse was unable to start a new IV so the "IV team" was called in. The "IV team" is a group of nurses who do nothing else but starting IV's on patients. A wonderful nurse named Judy showed up and in a matter of seconds she had an IV going in Lily's left arm. As she was about to leave I told her how painful the IV in Lily's right hand was, wondering if it was really supposed to hurt. She said that it was not supposed to be painful at all and she promised to come back and redo it after she had helped another patient. About an hour later she came back and redid the other one and Lily was finally pain free. Later that morning Judy came back with a gift she had gotten for Lily, a ring making kit. What an amazing person and nurse!

By mid morning Lily was finally able to get some sleep. None for me though. By 10am a dietician came by to teach me about counting carbs and reading labels etc.

By 11:30am Michael walked in the door. He had taken the first flight home from Mexico where he had a layover with work. The other kids had spent the night with good friends of ours.

At noon we had our first diabetes care class with a wonderful educator from the Diabetes team. We were taught how to do blood glucose tests, to give injections, how to identify hypoglycemia and hyperglycemia, what to do in an emergency and how to administer a glucagon injection in the event of unconsciousness or a seizure. A lot of information to take in for anybody but extra hard when you haven't slept in 30 hours.

By dinner time on Monday the 24th Lily was taken off the IV medications and was allowed to start eating and drinking. I gave her the first shot before dinner and from then on Michael and I have been responsible for all of her injections and blood glucose tests.

Unfortunately she caught a cold while in the hospital and we had a difficult time managing her glucose levels. Apparently diabetes gets a little tricky to manage when you are sick. Her numbers stayed pretty high, mid 200's-mid 300's and she kept having Ketones in her urine. In order to go home she had to have 2 negative Ketone tests and it wasn't until Wednesday afternoon, the 26th, we finally got cleared to go home.

Spending Christmas at the hospital was hard but they sure made it very special for her. Christmas morning she got a stocking with Christmas gifts. Then, right before noon Santa came by with many more gifts. Such wonderful people to volunteer their time on Christmas to bring some joy to the kids in the hospital!

 Santa visiting.

 Snow fell on Christmas day. This was the view from Lily's room. The only "exciting" thing was watching the helicopters land and take off right on that roof. Heart wrenching at the same time knowing that some child was so sick they had to be airlifted to CMC.

 Lily and I went for a walk on Christmas day to see the miniature trains at CMC.

We are so thankful for all the wonderful nurses and Dr's taking care of Lily while she was in the hospital! And we are incredibly proud of our brave little girl. She's been so strong these past couple of weeks!