Friday, April 16, 2010

Soccer

I guarantee you that this will not last! I will not post after every game since they have games twice a week.
Levi's team won 8-0.  I did not get a lot of good pictures of him but I promise to try better next week.  Here is a nice one of him and his coach right before he sends him back in after a water break.
Shelby played the goalie position the first quarter and this is her before I confiscated her gum.
It had rained right before Levi's game, an hour earlier, but the sun had come out for the game.  By the half time break the clouds had started to roll back in and it got cold fast.

Garrett started Track and Field this week so that is one more thing...  Thankfully I have a close friend who's son is with Garrett and who's daughter is older but has soccer practice the same as the kid's games so we make arrangements to get the kids to the places they need to be.

Seth is getting the hang of his medication he started a couple of days ago. We have not heard back yet about when the insurance will approve the growth hormone. So hopefully we will have a slow, uneventful weekend and we hope you do too!

Tuesday, April 13, 2010

Update


Now is where I try to catch up on everything so I do not have to repeat it a million times.


Here is beautiful little Miss Katie Lynn.  Can you just see that first tooth ready to just have some steak? From what I hear she loves to go, go, go.  There is not much that keeps her down.  Yes, she is wearing a Minnesota Twins outfit.  Heath asked for one so while I was in Hutchinson visiting my parents I just had to pick one up for her.



On to the next youngest: Shelby
Tonight was the first night of many soccer games.  Here she is fighting for the ball.  She has taken on Garrett's look and decided that she did not want her socks to match. Her game ended in a tie zip to zip.

Let's  see if you can read long enough and not be too tired to go on and see what has been happening with the rest of the crew:
So for Big Blue in March they had a 3 year old show up and there was no one there small enough for him to wrestle.  So Dave asked Seth if he thought he might like to give it a try.  So As you can see by his hat he pinned the little guy twice and won first place.  This was his first pin and his first first place.  We were not prepared for this so Garrett had to find him a singlet and he did not have his socks or his wrestling shoes.  I promised in March I would post these and never got around to it.  So Seth gets 2 things.

As you can tell Seth is a little guy.  He will turn 9 in June is just about 42" tall and weighs around 36 lbs.  He has grown very little in the last 4 years.  We have seen many doctors and it never went anywhere until now.  He has a wonderful doctor who is the first to run the proper test and look into why he is not growing.  So after a growth hormone stimulation test (the last doctor just tested it without stimulating it which gave us an inaccurate account) and an MRI she came to the conclusion that his pituitary gland was injured in the car accident almost 7 years ago.


Now let's see if I can explain this (the image can be clicked on to enlarge in a new window...if I coded it right.).  The pituitary produces 3 chemicals.  The first is the ACTH which goes to the adrenal glands right above the kidneys.  This produces the cortisol. Cortisol is a stress hormone produced by your body and is used for and immune function.  You can read more about it here.  The doctor said a normal level is about 20  Seth's started out at 6 and after the stimulation test the highest it got was 11.  This is very dangerous and we have been very blessed that Seth has not gotten very sick because it could be very dangerous if not deadly for him.  He will start a medication for that tomorrow (the pharmacy had to order the mg he needed)  he will take 1 pill every 8 hours no matter what time of day.  So I will have to wake him at 1:00 a.m. or so, so that he can take it.  They do not stay in the body longer than that and his body does not produce enough.  If he gets sick I will have to up the dosage accordingly up to 16 pills a day if needed for his immune. I have a chart that tells me how many mg he needs for temperatures etc. If he gets really really sick I have a syringe I will have to give him a shot immediately. I passed the shot test I had to take today with flying colors :).  He will have to wear  a medical alert bracelet for this. Like I said God has really watched over him!  The next would be the growth hormone.  The normal level is 58-329, Seth is at 33ng/ml (0.1 percentile = 35 ng/ml) after the stimulation test.  So obviously that is a quite a bit low.  So now the growth hormone company goes back and forth with the insurance company and the doctor making sure is it is very necessary (the cost is about $30,000.00 a year).  We should get to start it by the beginning of May at that time we go back in make sure I know how to give that shot every night before he goes to bed.    Things we have to watch for (1/1000 chance) is pain in the hip where it can actually slip out of the socket and headaches due to fluid on the brain and spinal column.  These are rare and will be tough with a hypochondriac child. :)  If either of these do happen we just call and go in and they cut back his dose until they find it is safe for him and then try to build it up again.  The 3rd chemical is the Thyroid Stimulating Hormone. Right now his Free T4 is in the normal range but very low in that range.  That will be monitored closely and he will start a medication for that shortly after we get the growth hormone started.  I think I covered it all.  I have lots and lots of paper work to read and lots more to learn.  I appreciate your prayers in the past and please don't stop, I will still need them very much in the future!  If you did not understand please feel free to ask.  

Now if you haven't fallen asleep with all of the medical stuff on to Levi:  He also had his first game tonight.  Levi did not make it to the one practice that they did have because we had to leave that day for state wrestling.  So he found out that he needs to get back in shape.  I sat and watched Shelby's game but I am thankful for the zoom on my camera as I had to go across 2 fields to get some shots of him. His team won 3-1.  At first I was told that he scored 2 of the 3 goals for his team.  Afterwards he told me that he kicked it and the ball hit one of his friends shoe (who was on the other team) and it went in from there, so actually he only claimed 1 of the goal.s ;) Levi also went with the one red sock, one black sock look...



This also is a little late...can you tell I have been busy?  Garrett had a tough time at state.  My heart still aches for him.  In the first picture this is the second match he won.  The boy in red ended up taking 3rd (and Garrett beat him...)  The second picture was Garrett walking away after his second loss (what a beast!) and his end of state. I felt bad for him because the last boy he wrestled got one point up and then stalled the rest of the match.  At one point Garrett actually took his hands off of the boy to show the ref that the other boy was not even trying to make a move, the ref did not call stalling but instead told the boys to keep wrestling.  His coach (Dave Connor) said it was one of the hardest losses he has ever seen in his 25 + years of wrestling because he not only knew it was Garrett's last year but that Garrett was a much better wrestler than the other boys and he deserved to be in the finals.  6th place and up where in the finals and Garrett placed 7th.

Kaleb will still be at school for a few more weeks.  Please pray that he has safe travels home.  He is traveling back with a friends so thankfully he will not be alone or the only driver.  He will be working at Camp Chetek again this summer.  He had a job and had planned on staying in N.C.  Chetck came up and offered him a position.  He told them that he had tuition to pay and would have to pass.  The next day his housing fell through so he could no longer afford to stay there.  So God showed him where God wanted him.  Pray that his donations will be high enough that he does not have to sit out next fall.  The school he is attending does not take outside funds.  If it is where God wants him to continue He will supply the funds.

I have had numerous emails asking how I am doing.  I guess the kids keep me busy enough to not pay attention to that.  I do know when I finally get to sit down at night it is very painful to get up again.  I am still having paralysis episodes.  The neurologist dismissed me because they could not find a reason.  So I just deal with them.  I see a rheumatologist for the fibromyalgia and they switched my medication once again last week. This new stuff makes me itch from head to toe all day long.  I mentioned the other things to my doctor but he must have had a busy day because he just kept telling me that he thinks my pain is under control after I told him that I actually pushed myself to walk a whole mile on my treadmill and when I laid down it felt as if my bones where being yanked out of my body.  If that is pain control I would hate to see what he thinks pain actually is (and this is coming from a woman who refused pain meds after a c-section).  They ran a bunch more test which he sent me the results to via web-site but I have not heard back from him yet what they mean. He did tell me that I should get a hold of my general practitioner and get another referral back to neurology to look into the other things because they are not related to the fibromyalgia....been there, done that. I am not going in the MRI machine again!!!!  I really don't use the left side of my body that much anyways. ;)

Well, we cannot forget Steven.  He just works from sun up to sun down to keep up on all of the medical bills.  They told him last week that he would be going to Ukraine in a few weeks to do some repairs for work.  They even had him go down and apply for a passport and expedite it so it would arrive on time.  He was so excited and was looking things up and showing the kids where he was going and what he was going to do.  Today at work they had him get all of his gear together and ready to ship out so it would arrive and make it through customs before he got there.  Then he got the news that the customer was getting picky about the cost.  Since they had done some alterations to the product on their own the trip would be at their expense to repair them.  So now everything is up in the air.  We really hope he gets to go but we want it to be in God's timing so that he is kept safe.

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