Miracle

Yesterday, I spoke to our new case manager from the company that will be handeling Matthew's growth hormone replacement. We were supposed to start in August but the nurse would not call me back. I left several messages. We had given up and decided that it would be easier just to start the replacement after we moved. But, we are still here and were due for a check up so changed our mind and chose to begin the replacement now. The nurse took 2 weeks to send in the order. When I talked to the case manager yesterday, she had just received the order and submitted it to our insurance for approval. They are ready for a fight. She said it would take about 3 weeks to hear back from the insurance and then they are frequently denied and so then they have to appeal in our behalf.

I was feeling rather discouraged this morning as I thought about our house NOT selling and this waiting and insurance business. The phone rang and it was our case manager saying that the insurance had approved the growth hormone replacement for Matthew! One day...MIRACLE!!! Matthew so needs this and we are ready! Here is a picture of Matthew and his same aged cousin.


Matthew is not excited about doing shots BUT I think that will change when he sees himself shooting up. He will do one shot a night for several years...until he is done growing. (Note to self: Make sure you are not giving Isaac the growth hormone and Matthew the insulin!)

So thankful for those tender mercies once again!!!

Good report

Here is a You Tube link to video of my speech at Children's last week. The last line is missing from the video because they needed to seat someone important right then and there. Maybe when the hospital gets me their copy I can post it along with the ribbon cutting and pictures with Matthew and his Doctor. I love that Isaac is playing with Mike's face, totally unaware of the 200 people watching him.
http://www.youtube.com/watch?v=soB5YG8k2Dc

Matthew had great news yesterday from cardiology. His doctor said he has never seen him look so good. His x-ray was crystal clear...he thinks opening up that obstruction in the aorta and getting his heart rate up is really helping keep his lungs clear and working better. His echo looked fantastic! Heart function is great. There is still a small portion of the aorta that is more narrow than the rest but it is not slowing anything down at this point. Pacemaker is working perfectly and giving a battery life expectancy of 8 years. Matthew has lost a few pounds but it is unclear if that was fluid weight or not. He has been eating well and not having his migraines with vomitting at all so I can't believe he has lost weight for any other reason but fluid. We get to go up on fat to 2 grams a meal and then if he tolerates that well we can even try 3 grams a meal. This will help the growth hormone replacement work better that we will be starting in a few weeks. Very exciting!

Yesterday was our last visit with our Cardiologist who is retiring in December. We will miss him! He has been wonderful!

Noah also had a great day yesterday. He won the milk tops contest at school having the most milk tops in his grade. He got this gift bag full of goodies that he was very excited about.


We are looking forward to a few days off and spending time together! Happy Thanksgiving!

Children's Hospital Grand Opening

We were privileged to be included in the Children's Hospital Grand Opening Ceremony today. My good friend joined us and got some video but I still haven't figured out how to get my video to work on this blog but here are some pictures. We thought they would at least show the ribbon cutting on the news but they didn't.

The hospital gave us 5 days notice. I thought I was going to throw up but the rest of the family were super excited. I had surgery on Monday so didn't know if I was going to be able to pull it off. The boys got to be on the stage with me while I talked about them and then they got to help cut the ribbon. We shook hands with big people and got a hug from our wonderful heart surgeon. They served a fabulous lunch and then we toured some of the new areas that we had not seen yet. A Ronald McDonald house right inside the hospital that can serve 16 families. They have volunteers come 5 nights a week to cook and serve dinner to the 60-80 parents/family members that come through. The new sibling play center is awesome, the kids wanted to stay. Matthew actually asked me after we got home if he needed to go to Children's before we moved. I said no, I hope not! He responded, Uhhhhhh, I wanted to go there. As I said in my speech today, it is his favorite place to be. They really make it welcoming and fun!

Fall

WE CAN'T BELIEVE IT IS NOVEMBER ALREADY! And here we are, still in MN. We usually go through spurts where life is busy and stressful and then life is REALLY busy and REALLY stressful for a time and then back to busy and stressful...just like everyone else. We keep waiting for this REALLY busy and REALLY stressful time to pass but it just doesn't want to. (My favorite new country song..."Sounds Like Life To Me"...this is true for everyone.) In fact, this time last year started a new round of REALLY BUSY and REALLY stressful and it hasn't stopped...this is just life I guess.

Almost one year ago, November 17th, 2009 was the day little Isaac was diagnosed with Juvenile Diabetes. This STILL brings a great amount of stress to us as it is very difficult to keep him regulated despite our best efforts to do so. Isaac has been poked about 3,200 times this year to control his diabetes either for blood sugar checks or to get insulin. He is amazing and even likes to do his blood tests himself. We are working on having Joshua trained but it makes Isaac a little nervous. We still are really grateful that it happened at such a young age...it's just all he knows. We did have a little mishap with Isaac's Diabetes bag and supplies while in our rush to get out of the house for a showing. Someone left the bag ON the car and it got run over and completely destroyed.



The house has been on the market for 33 days and no luck yet. There isn't even hardly any traffic coming through. We will wait as patiently as we can. It would be ideal to sell in the next 3 weeks or the company will have to change their plans. It is really tiring having the house PERFECT ALL OF THE TIME. We especially love those 2 minutes warnings for showings. It will happen when it is supposed to. We already told the kids that Christmas is cancelled...at least the traditional tree and other such "worldly" traditions. Here are some of the finishing touches we did on the hosue.







The kids have been enjoying their fall with cross country running at school, leaves in the yard, and Halloween. We didn't get very creative for costumes this year. We were lucky to pull together ANY costumes this year. We tried to do the city walk again this year but the line was ridiculously long. We had never seen it like that before...we didn't think that many people lived here. So, we asked the kids if they wanted to stand in line for an hour and a half and then possibly not get anything if they ran out or if they wanted to go to the store and pick out their own bags of candy and go home and watch the halloween shows on TV. Luckily, they picked the store and shows so we took off. This way, they actually get to EAT their candy since we can pick ones with no fat and no peanuts. You can't avoid sugar/carbs.

Noah is the one in black in the middle getting ready to take off.

Matthew got to run with two 5th graders by his side and they did about the last 1/4 of the distance the other kids did so he wouldn't tire out. It was perfect!


We had a Clifford, Calvin & Hobbes, a wizard, and a guy with goofy glasses.


All but one of our doctors have been notified that we are moving and they have all been great. Each one had someone right off the top of their head in the area we are going to that would be able to meet our needs. We will really miss our team here. Hopefully we will be blessed with just as great doctors there as we were here. REALLY, REALLY hoping that the IEPs and other such things transfer over with no problem as well. Our realtor has assured us that there is a registered nurse in every school building so that is good.

Here are a few random other pictures for fun.




We celebrated the last of the birthdays for this year...Mike turned...OLD! We celebrated our 14th wedding anniversary with parent/teacher conferences and Matthew's IVIG. Time is just flying by...but with it being November...we will say that we are grateful for time, no matter how fast it wants to go. We are so grateful for our family and for all of the fun adventures we've had here in Minnesota and look forward to new adventures...very SOON...together in Georgia.

Oh yeah...the kids!

So focused on this move and fixing up the house...the poor children feel neglected. Here are the first day of school pictures.





The boys were not as anxious this year as last year and I didn't have time to be anxious so we have had a smooth, good start. They are all doing great! Isaac, of course, is dying to be a part of the school scene, asking for supplies and pretending to leave for the bus with the boys. He tells everyone he is in 2nd grade just like Noah. All of the kid's teachers seem fantastic! It's such a bummer we have to go in the middle of the school year.

A little funny: We were driving in the car one day a few weeks ago and were passing by a Target. Isaac (the 3 year old) said "Mom, there's a Super Target! Can we go to Target?" I asked why he needed to go to Target and he replied "Um, cause I need one of those memory sticks." Later when we were telling Daddy the story, daddy asked him what you do with a memory stick. He said "put it in the computer!" like duh dad, you don't know what a memory stick is for? They grow up way too fast!

Home Improvement

Just in time for the move...isn't that always how it works. The downstairs rooms are almost complete. We (Mostly Mike, but we all helped!) turned 1 LARGE bedroom into a smaller bedroom and a seperate storage room. Here is the progress.

















Mike just has to put in the trim and doors. We will have the house on the market Tuesday.

News Story

Apparently this aired on Saturday and we missed it. Here is the link to Matthew's news story from surgery.

http://www.wcco.com/video/?id=83001@wcco.dayport.com

Here is the written article:

http://wcco.com/seenon/childrens.hospitals.clinics.2.1884611.html

WE SAID YES!

After MUCH consideration (months, in fact), we have accepted a job transfer to Georgia! The house will be ready to market in 2 weeks and as soon as we sell, we will go.

This was a HARD decision to make...the biggest reason being...we came to Minnesota to save our children's lives. It is REALLY hard to walk away from our WONDERFUL medical team here who have literally been the hands that have kept our children alive! Starting over with 13 or so doctors is, well, OVERWHELMING to say the least! When we told our Cardiologist last week that we were going, he laughed. He was shaking his head and said, "I would LOVE to see the face of the guy when he first meets Matthew." Georgia's Children's Hospital is ranked #7 for cardiac in the nation and Minneapolis is not on that top 30 list so I think we should be in good hands. And, our Cardiologist has a buddy out there and has already put a call in for us to help us to the right place.

Mike has been traveling to Georgia every month and it has gotten really old. We have LOVED Minnesota and will miss it and everyone here! We are up for a new adventure!

By the way, Matthew's news story is finally supposed to air next week sometime...channel 4 news for local people.

GREAT NEWS!

We had cardiology follow-ups today and both Joshua and Matthew look great! No surgery for Joshua yet!!! Josh didn't change at all from last year so hopefully will last another year. AMAZING! This will give him time to grow so when he does have surgery, they are more likely to fit an adult size valve so he won't ever have to have surgery again. YAY!

Matthew's physical restrictions have been lifted. He gets to stop his coumedin, so no more monthly blood draws. His pacer settings were changed to 80 from 90 and pacer is working wonderfully. No casts for 16 days! Stopped the nebulizer treatments.

I hurt a tendon in my thumb really bad last Saturday and have not been able to use my hand all week so this typing one handed deal is pretty obnoxious. I can't tell you how frustrating this week has been with no hand!!!

SO GLAD we are not having surgery right now!

Busy...busy...busy

If it's not chronic illness, it's house projects keeping us busy. I'm way behind in blogging so this post has a bunch of random things so I can just be done.

I have to go way back and say that we had lots of July birthdays...lots of cake...and now lots of big, grown up boys! Birthdays were very low key this year.
This is Isaac in his new big boy bed hat he loves.




This is Noah's birthday...



After I posted about the big ugly tree coming down in our front yard a few weeks ago, I walked through the living room and was blinded by the sunshine coming in.


Matthew likes to do the harvesting from the garden.


We are currently re-finishing the bedroom downstairs. The bedroom was huge and only partially finished with carpet on concrete. We had an egress window put in and now Mike is framing and dry walling to make a little bit smaller bedroom and a nice size storage room.
This is the before.


The new window.


The room now...before framing begins.


After this, the basement will have been completely re-done and then we will do the bathroom upstairs and be finished.

This is Matthew getting to swim after the cardiologist gave him the ok.


Matthew coughed up a total of 7 casts but has not had one for 9 days so I think we are finally done with those. He has a follow up with cardiology next week where I think he will get the ok to resume normal activity. He will be so happy! It's been hard to have to sit and watch the other kids play. He is doing GREAT! We ordered a book to be printed of the caring bridge site from surgery so we now are in posession of a hard bound copy of his whole site...journal entries, pictures, guest book and all. I think it's awesome that they offer that. That will be so nice to have in the future.

Joshua also has his cardiology follow up next week so we will be finding out if he is ready for his valve replacement.

The boys are really bummed that there are only 3 more weeks of summer left before school starts. We are not ready!

Not for WEAK!

I am posting pictures of Matthew's casts. Do NOT look below if you don't like this kind of thing. If you followed Matthew's Caring Bridge site through surgery, you know that he has been struggeling with his Plastic Bronchitis again. He has coughed out a total of 5 casts so far since this surgery. I think it is fascinating and am just in awe that he can cough these out so I am sharing because some people like gross stuff and are curious! Matthew coughed the thicker one out (on the bottom) Tuesday morning with some effort and then woke up during the night and coughed out the smaller one a little more easily (on the top). It's really quite amazing. They are called casts because they actually form around the bronchial trees as a liquid and then harden there...You can see them here...all the little branches. Something makes them decide to let go and then the only way out is by coughing them out. Some of them have been a little scary because as you can see, they are quite large and block the airways as they try to pass. Especially after heart surgery, it can be quite difficult to cough hard enough to get it through.




Are you ready?






Are you sure you're ready?






Actually, they are not that bad!