Wednesday, September 30, 2009

Update!

So, today Mr.Matthew had a full day of doctor visits at PCH. We went to see his opthamologist first. Good news there! Nothing has changed in regards to his vision and eye health. We do have to go get the 'visual fields test' (this checks his peripheral vision), but that is just something they do every so often with Matt, not something that means they are worried something is wrong.

Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!

Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!

Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!



Sunday, September 27, 2009

Thursday, September 24, 2009

Recent developments

So, I guess I should update the latest about Matt. He has had such a fantastic summer! His central line was removed which has meant one significant thing - SWIMMING! It has been nice to not have to worry about caring for his line.

Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!


Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).

The next week was a short week because of Labor Day.

Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.


Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!


Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)

Why we love boating







(Matt had already gotten out of the car and gone up to bed.)

Labeling kids

I think children are too quick to be labeled these days. Andrew, though, believes that everything should be labeled and took the liberty of labeling Jake (where IS that Drew when I'm working on organizing his closet?!?)



A closer look......

Some Natisms



Nate is such a wonderful, fun child to have in our family. He has a pretty strong personality (note the 'Believe the Hype' shirt....) that I believe will serve him well in this life. He oozes confidence and is not afraid to stand up for things that he believes to be unequal or not right. I hope I can instill in him the power that personality trait can carry. If used for good, he will be an amazing example to those around him and people will continually be drawn to him. He is a natural leader and we are lucky to have him!

A few weeks ago we took the boat and headed to Willard Bay with just the older boys (Jake and Audrey napped at Grandma's house, which is very close to Willard). It was a fantastic day! We packed a picnic, ate on the boat and everyone had lots of turns tubing and playing in the water. After we were finished boating, we had the boat tied up to the dock while Warren went to get the car. All the sudden I hear a splash and look up to see Nate struggling in the water off the dock - without his life jacket! It is quite deep and Nate is not yet a strong swimmer, although he's had swimming lessons. Thankfully, I just hauled him out of the water and he was fine. After I get him calmed down, though, I asked him what he was doing. Did he fall in?

"I just wanted to see if it was deep," he replied!!!

What a way to test! I think the experience sufficiently frightened him and I'm confident that jumping in lakes sans life jacket will not be repeated (by Nate, at least).


This summer we also headed to Park City a few times. We discovered that on 'off' weekends, we can get a two bedroom condo type room at the Marriot Summit watch (a time-share resort). We took advantage of a great rate and played in the amazing pool, let the children go to 'kids night out' while Warren and I went out to dinner, and just generally had a wonderful few days away. Nate and Drew have learned to ride two-wheelers this year, so we took the bikes up to ride the biking trails around Park City. After their ride, Warren and Nate were in the parking garage putting bikes back on the bike rack. It is just the two of them until a pretty lady walks by and Warren is mortified to hear Nate do this:


That's our boy!!!