Merry Christmas !!

Sigh of relief !!!

Maddy had her 18 month checkup on Friday and I am so glad she was able to get her H1N1 shot! I've been hearing of a lot of cases where children have gotten really sick, espically when they have underlying health conditions. She will need to have her 2nd dose in a few weeks, but at least she is partially protected now.

Tristyn will be able to get her shot soon, the school disctrict will be having clinics sometime in the next 2 weeks, as soon as they get their supply. So we will all be able to breath a little easier!

When I took Maddy to her appointment it was like walking into a space ship! Every one wearing masks & gloves, parts of the building closed off, it was just really strange! Luckily we had an early morning appointment and we were the only ones in the pediatric waiting area, but we had to walk past the walk in clinc to get there!

As for her checkup itself, she is healthy as a horse! 21 pounds, 15 ounces, 31.5" tall. Her doctor is very happy with how her physical therapy is helping, her speach is right where it should be for her age, and her motor skills have caught up. she figures that in 6 months to a year she will be totally caught up! Yay Maddy !!!


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Sorry !!!

OK I’ve been slacking these last few months with posting. There has been a lot going on here in our household! Maddy is doing great, she just started walking a few weeks ago, at about 17.5 months old! She’s also saying a few words: dada, momma, up, ball, all gone, and kitty. She is still on the small side at about 20.5 pounds at her 16 month visit, but health wise her doctor is happy.

In May Tristyn was diagnosed by her school with Autism. She was diagnosed very late at 4.5 years old, most children are diagnosed between ages 2 & 3, so this leads us and her teachers to believe she has very high functioning Autism. This is just an educational diagnosis, we are in the process of getting a medical diagnosis which will open up more therapy services for her. I am so glad that the school finally tested her, because we were beginning to think we were doing something wrong as parents and this finally answers questions about all of her quirks, which I will talk about in another post.

In Sept she started school again, we decided to let her have one more year in pre-K this year, she just turned 5 in July, and she’s just not ready for kindergarten yet. She has speech therapy again this year, and we added Occupational & Physical therapy because she has very low muscle tone (hypotonia) Well, that’s about it for now, I promise to start posting again more regularly!

Physical Therapy

Maddy is going to be starting physical therapy. She was evaluated on Monday and they found she has about a 40% delay in her gross motor skills & she has muscle weakness. That means that right now she is at about the level of a 5 month old. It's hard to believe that in just a few days she will be 11 months old, and the BIG ONE is just around the corner. Just in the last 3-4 weeks she has finally mastered sitting. She still falls when she's tired. Her therapist is espically concerned that she is not willing to bear any weight on her legs, and she still has a hard time rolling.

On a good note, she is right where she needs to be cognitivly, verbally & socially, her therapist is impressed that Maddy is already trying to feed herself with a spoon, most of the food ends up on the floor, but some makes it to her mouth.

I think we broke a record!

I think we have broken the record for the fastest moving virus. Here's the schedule:

Tuesday: My Mom & Dad watched Tris & Maddy all day.

Wed. night: My Dad calls & tells me he came down with a nasty cold & hopes the girls don't get it (Thanks Grandpa!)

Thursday: All is fine.

Friday 7:30 am : (here's where I start the stop watch because I don't know when her symptoms actually started) On Friday's Maddy is watched by Tony's Dad, he comes to our house. So, Grandpa comes over & I leave for work, Maddy is just fine at this point. I get home at 5pm, and she is just a mess! Fever, red cheeks, snot everywhere & she is just miserable! (Thanks again Grandpa!) So I give her Tylenol, after about an hour the fever is gone & she is feeling better. She goes to bed early & surprisingly sleeps through the night.

Sat. Morning: She's still a little warm so she gets another dose of Tylenol & the fever goes away and doesn't come back. She is fairly happy through the day, except for the constant runny nose. She goes to bed early again & sleeps through the night.

Sun Morning: She is just fine, no fever, no runny nose, perfectly happy all day long!

I have never seen a cold virus move so fast! Less than 48 hours from 1st symptom to being symptom free? I just pray that this wasn't just the start & that it comes back with vengeance.

By the way, Tristyn never got the cold at all!

Maddy's Heart Journey Photos

I finally updated her photo diary. I have 70+ pictures loaded & this is a work in progress so keeping checking back. I will slowly be working on adding comments to the photos also, so feel free to add your own comments if you wish. I hope to keep this photo diary as current as I can. I have a link to her photo diary in the blog roll to the right, or you can click here. Maddy's Heart Journey

Click on the photo to make it larger & see the comments.

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It's about time!!!

OK, I've been slacking with posting pictures, so here you go. Enjoy!

Here is Maddy at 7 months, showing off how well her boo boo has healed.

Here is Maddy at 7.5 months with our pastor. We are so thankful to have him as a Pastor. The night she was born he came to the hospital at 2 am, and waited with us as they prepared to transport her. The day she had surgery he was there when we got to see her in recovery, after a 7 hour surgery.

Maddy at 9 months. Is that a mischievous grin or what?

Tristyn showing off her missing teeth

Maddy & Lucky

Maddy on her 9 month B-day (eating or playing with macaroni)

Tristyn & Maddy at a vintage snowmobile show. That's Tony's 1973 Arctic Cat Panther.

Tris with her brand new helmet

Me & Tris getting ready to go for a snowmobile ride.




Lucky has a heart! I did not edit this photo, he actually has a perfect heart on his right side! There is a small white line of fur towards the left side, almost like a broken heart? How fitting that he found our family, we now have a heart baby & a heart kitty. Read about how we rescued Lucky after being hit by a car.





Lucky & our eldest furry daughter Jasper who is 8.5 years old.
(Spunky is 7 years old, she's not pictured)

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You have to check out these blogs!

If you or someone you know has a CHD or if you just love reading inspiring stories you need to check out this blog: Inspiring Hearts. This blog is packed full of hope & inspirition, some of the stories are extremely touching! Also check out it's sister blog: Finding Inspiration Everyday!

If your child needs surgery: CHD Awareness post #3

If you child needs surgery here is a list of things you should bring to the hospital. They will help ease tension & pass the time. Some of these items depend on the age of the child. These are in order of importance (kind of)

Bring a camera & video camera and take lots of photos. It may be hard to take pictures when you child is in pain, but there will come a time when they want to know what happened to them & what better way to show them than with pictures & videos.

Bring a notebook for notes or questions and/or a journal to help you remember daily events. Trust me, you won't remember half of everything that happens unless you journal. And again this will be helpful when your child is older & curious about what went on.

Onesies or shirts that button in front

bring things familiar to baby such as beanie babies, toys, blankets, books, music, video tapes, & batteries.

for older children, bring books, videos to watch, & other favorite toys.

Calling Cards

Bring your child’s favorite Band-Aids (Blues Clues, Sesame Street, etc).

change for vending machines

Bring somethings for yourself, magazines or a book to read, crafts, whatever will ease your tension.

Wear comfortable shoes & clothes, some hospitals are quite large & you'll be doing a lot of walking.

Ask about a long term parking pass or validate parking

You’re your child’s advocate. Don’t be shy with questions and don’t hesitate to obtain a second opinion in you want one.



For those of you with experience, please post a comment & let me know if I missed anything.

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CHD Awareness #2

How are congenital heart defects treated?
Today, most heart defects can be corrected or helped with surgery, medicine, or devices, such as artificial valves and pacemakers. In the last 25 years, advances in treatment of heart defects have enabled half a million U.S. children with significant heart defects to survive into adulthood.

Is there a prenatal test for CHD?
An echocardiagram can accurately detect many heart defects. This test needs to be performed by a specialized doctor and not an obstetrician. Some heart defects can be detected through routine ultrasound.

What causes congenital heart defect?
In most cases, scientists do not know the cause but feel both environmental and genetic factors appear to play a role.A few of the environmental factors that increase the risk are drinking alcohol and cocaine usage. Some maternal medical conditions increase the risk of fetal CHD. The most common is diabetes but not all forms will increase the risk. Women with PKU are also at risk are recommended to follow a special diet prior to pregnancy. Some studies suggest that not enought of B vitamin folic acid is taking before and during pregnancy.


Source: Little Hearts Inc

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Time to build some muscle

Maddy saw her ped today. All is well as I expected, but she is concerned that Maddy is not sitting on her own yet, she's not bearing any weight on her legs, and that her overall muscle tone seems week. So, Maddy will be starting physical Therapy from our birth to 3 program. I'm very familiar with this program, Tristyn did her physical therapy with them also and I was very pleased with the results. The doctor said Maddy could be having this problem for a number of reasons: Heredity - seeing how Tristyn was delayed also - could be from O2 deprivation right after birth - or from the surgery. On a good note, she gave Maddy a little test & she scored very well cognitively & socially, she is using her prinser grasp (thumb & pointer finger), feeding herself finger food very well & babbling constantly with vowels & consonants. So, she will start the physical therapy in a few weeks, I am glad we are catching this early. I ordered her a Fisher Price Jumeroo, so I hope she likes it & builds some strength in her legs. It's time to crack the whip and start doing, situps, pushups, pullups, (LOL)

National CHD Awareness Month

February is national CHD awareness month. CHD is a poorly understood birth defect & needs more funds for research! Here are a few facts on CHD's:

What is a congenital heart defect?
Congenital means it is present at birth. Heart defects begin in the early stages of pregnancy when the baby's heart is forming.

What does CHD stand for?
It's the abbreviation for congenital heart defect.

How many babies are born with CHD?
Approximately 40,000 babies are born each year in the United States with a CHD. That equates to 1 out of 125 babies born with a heart defect.It is the #1 birth defect with more occurrences than Spina Bifida, Down syndrome or hearing loss yet many are not aware of this condition.

What is the number one birth defect?
Congenital heart defects.

How many kinds of CHD are there?
There are approximately 35 different types of congenital heart defects.


Throughout the month I will post more facts.


Source : Little Hearts Inc

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Poor Girl

Tristyn has a nasty bladder infection. She was just miserable last night, fever, chills, tummy pain. She started some meds last night & they seemed to help, she felt better this morning. I hope that this infection goes away fast. Guess I'll have to stock up on Cranberry juice.

Daycare blues!!

We had the perfect person watching Maddy for the last 6 months, her family attends our church, so we know her quite well, she was a part-time nurse, and therefore certified in infant/child CPR, and she was just a great match, Maddy loved her. About a month ago her husband lost his job & she had to take more nursing hours. So, we adjusted Maddy's schedule & made it work with hers. So on Monday, she called me and said she was offered full time & had to take it because they really need the benefits & money, (she has 3 kids of her own) So we have been scrambling to find daycare & it's not easy!! I understand why she had to stop daycare & she was upset about it also. I also feel for the other parents, she watched 4-5 other children. We really need to find someone quick, we are wearing out our welcome at the grandparents! Please pray that we can find a good Christian home to watch her.

Great Appointment

Madilyn's apt went great today. It started with the EKG which only took 15 min!! This is because she had 2 wonderful nurses who really seemed to know how to entertain her. The first nurse made a game of putting all the stickers on and the second held Maddy's hands & talked to her & kept her attention the whole time, Maddy was just fascinated by her and just laid calmly & listened to her. They only had to restart the test once, because Maddy decided something the nurse said was funny & giggled.

More good news, because her EKG looked so beautiful, Dr. Dyke decided she didn't need an echo today, and she probably won't need one until she is 3 or 4 yrs old, unless a problem is detected by the EKG. If she needs an echo before this age she will probably need to be sedated.

Her heart mummer has gotten softer, so that means her heart is adjusting well. I did bring up one concern: Her arms & legs tend to turn blueish very easy, especially when sleeping. You can notice it a little in the picture at the top of the blog, but sometimes they are even more blue. He reassured me that is normal in the first year of life. He called it "some kind" of cyanosis, I can't remember the name and said that it happens even with babies whose heart is perfect. He said he would be concerned if her lips, tongue, or torso became blueish, or if her hands & feet didn't pink up when she started moving around.

So, Maddy is doing GREAT! She is up to 16 pounds 4 oz & is 27 3/4 inches long. And we don't have to go back for a visit for another 6 months now.

Next Monday she sees her regular Ped. & I'm sure that apt. will go well also! She'll be happy to see that Maddy is finally starting to gain some weight!

Frozen

Got to work this morning only to find that our pipes were frozen, good thing I went potty before leaving the house, LOL! Some of the other ladies weren't so lucky, they had been drinking coffee already. Luckily our City Water Works is practially our neighbor & they came right over to thaw us out, so were only without water for an hour or so. Now we have to leave a faucet running until spring, or we might freeze up again. This happens to us almost every year, so no suprise really.

The thing I don't understand is why this didn't happen during our deep freeze. In the beginning out Jan we had 10 days strait where our high didn't reach above zero and the average low was -35 below. So today, its 20 above & now the pipes decide to freeze - go figure. This weekend is going to dip down again, but not as bad, it will be around 4 degrees. It's almost Feb. so hopefully the worst of winter is over. I love winter, snowmobiling, sledding, etc, but it's no fun when it's too cold to enjoy it.

Cardio appointment

Maddy has a big cardio apt coming up on Monday. She's scheduled for a Echo & EKG. I'm not nervous that they will find anything wrong, because she has been doing great, its just that these apts always last so long. The she had these same tests at 4 months old and the EKG took 45 min, the Echo took 1.5 hrs & the Doctor visit took 1/2 hr, ad all that up with the wait time in between & we were there over 3 hrs. The reason the tests take so long is that the machines are very sensitive & we have to try to keep Maddy still & keep her from pulling the stickers off. We resorted to feeding her during the tests, kind of holding the bottle in front of her & letting her drink, we couldn't hold her because that would mess up the readings also. Now that she's almost 9 mo old I don't know how we are going to keep her still, maybe the docs have some tricks? We'll see.

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Sitting Pretty!!

Maddy is finally starting to get the hang of sitting. She sat up for almost 5 minutes last night. I did have her Boppy pillow behind her just in case. She teetered a couple of times but kept her balance. I could tell she was starting to get tired after about 5 min, but that's not bad, after all she is using new muscles that are not used to being worked. If we keep doing 5 minutes a night, maybe by the weekend she'll be up to 10 minutes! Way to go Maddy!

Mark your calendar: Congenital Heart Defect Awareness Day is Feb. 14, 2009. I'll try to gather up some interesting facts on CHD's & post them throughout the month of Feb.

What's that strange noise?

Yesterday Maddy was sitting in my lap playing with her favorite butterfly rattle and I heard this strange, soft, grinding noise. I know her rattle doesn't make noise. I hear it again, it sounds like Maddy is grinding her teeth. OK, how can she grind her teeth when she only has 2 and they are both on the bottom. So, I look in her mouth and sure enough, 3 more teeth popped in on top. She was a little fussy over the weekend, but I though that was because of her sinus infection that is finally getting better. So we are up to 5 teeth, way to go girl!

Tristyn went for a snowmobile ride with Tony. She loves riding with him, and was asking to go all weekend. They only stayed out for about 45 min because the temp started dropping, a cold front moved through last night, when I got up this morning it was -20 without the windchill (Burrrr).