Can I Just Say...

…that my son ROCKS! I have been so impressed by him and his maturity and strength. He has been handling all the shots with so much grace. It amazes me how he can watch the shots (even though we say not to) and does not even flinch! I do have to admit that my feelings are a bit hurt because Scott wants Chuck to give him the shots… but, I guess I really don’t mind if it’s easier for him. It’s just that mom’s supposed to be the caregiver, right?

The last “big shot” that he got was the worst by far. The HUGE needle got clogged so they had to inject him a second time. But, my boy handled it better than any other time for the BIG ONE.

I never would have thought that I would be talking about shots, genetic diseases, IGF-1, biweekly blood draws… wow.

...that my husband ROCKS! He has been handling the shots and the like so much better than I would have ever imagined! These are things that we didn't bargin for but, I am sure glad that he is in this with us!

…that I am sooooooo glad that school is almost out! Bring it on…. Summer!

Young and Old at the Same Time?

I received a friend request the other day on Facebook from a old friend from high school. Someone that I hadn't spoken to or heard from in 20 + years. He said that he had been looking for me for a long time and it took 10 minutes on Facebook. Crazy, this phenomenon!

What I find so weird is that it made me feel young and old at the same time. It doesn't feel like I have been out of high school for 25 years and that I am 43 years old. Today a Facebook friend request sent me down memory lane to the early eighties and working at a McDonald's for 3.75/hour. Listening to music by Def Leppard, Van Halen, and the like and cruising around town in a 1974 white Mazda station wagon that my parents had given me, thinking that I was sooooo cool. What a fun trip that was.

But, I had to return to 2009 and face the reality that I am 43. Which isn't all that bad really!!!!! I just never pictured myself being in my forties with gray hair, wrinkles and all the creaks and groans of my knees.

I wouldn't change my life or things that have happened to me. All the experiences that I have had make me who I am today and I kinda like who I am. Creaks, groans, gray hairs and all!

Check this out! Dian. Circa 1982.

Update on Scott

Here is a copy of the latest email that Chuck has sent out:

Greetings All,

I don’t remember the last time I emailed everyone, so I think an update on Scott is overdue. Praise God, we have mostly good things to report. I’ll try to keep this at a high level to keep this as short as possible.

Bad news (this is the one bad thing, so I’ll just get it out of the way 1st):
· I think the last time I sent an email, we were excited that his growth hormone levels were dropping down to near normal. Well, the blood test after that email showed his levels had gone back up, which means that the Octreotide is not completely effective for him. Because of this, he has to add an additional injection (Somavert, for those of you medically inclined out there) every other day (that’s the worst part of this). Dian and I will have to give it, which is something new for both of us. Today, a nurse came over and showed us what to do. Dian actually prepared the injection and gave it to Scott.

Now for the praises:
· Although we have to inject Scott every other day, the needle is really small. I believe it is just like the needles that diabetics have to give themselves. Scott said he didn’t even feel it (I believe him; he didn’t even flinch when Dian gave him the shot in his arm, even though he was watching her do it).
· Scott is doing much better with all of the shots. We had a crisis point a few weeks ago when we had to stop his MRI midway through because he refused to let them give him an injection that was part of the MRI. That seemed to be a turning point. He decided he had been “stupid” (his description of himself, not ours) and would do better, which he has. He is such a brave guy! Thank God for this, this is a real answer to prayer.
· A CT taken of his skull several weeks ago indicated that the bump on his right cheek is either unchanged or slightly improved. Dr Collins felt comfortable enough to extend the time until his next CT for this to six months, instead of every 3 months as originally planned.
· An ultrasound of his Thyroid gland revealed nothing new. It isn’t a normal Thyroid because of the MAS, but it is functioning normally.
· The MRI (done without contrast a few weeks ago – this was the one we had to stop because he refused to allow the injection that would give them the contrast MRI) showed that his pituitary has shrunk back to normal size! So, even though his growth hormone levels are still high, the Octreotide is at least helping some. This is a huge praise. This lessens the risk to his optic nerve, as the pituitary is now not right up against it. He finished the MRI today and did a great job with the injection – no fighting being given the shot!
· He still seems to be showing no ill effects. This is so wonderful and such a blessing, because we know of others with MAS that have had their daily activities curtailed, due mainly to the fibrous dysplasia in their bones. Scott has been playing Little League baseball this spring and enjoying it very much. I especially treasure every game, because his situation could change at any time, and he might not be able to keep on playing. As it stands now, we’re planning to sign him up for the fall season. I can’t wait! (I love watching Scott play and being as involved with it as I can – I think I have more fun with it than he does).
· We have had no problems at all with insurance. Everything has been approved with no problems; everything has been covered (minus the co pays, of course). We are so blessed to have good insurance. Each of us has a $500.00 stop/loss amount for prescriptions, meaning that we don’t have to pay more than $500.00 each per year in prescriptions. This is really good, because we will exhaust this amount just with Scott’s Somavert in 2 months.

Please Pray:
· First of all, please thank and praise God for how good He has been to us through all of this. He continues to show his love, care, and control each day.
· For Scott, that the Somavert will be effective in conjunction with the Octreotide and his growth hormone levels will drop to normal soon. Long term, I ask that his levels would drop to the point where his doctors determine he can stop taking the Somavert (I don’t even know if this is possible, but I would love to see this happen).

We serve a great God! Dian and I are grateful to each of you and we thank God for you and your prayers and support. Please keep them up. Also, we want to support you in prayer as well, so please send your prayer requests to us.

God’s Blessings to you all,

Chuck and Dian

Thank you all so much for your support and prayers!

My Son, the Slugger

Scott has been playing Little League for the first time this spring and has really been enjoying it. Yesterday at the game, my boy hit his first HOME RUN!

It was very exciting! The only problem was that Dad wasn't there yet, he had a meeting that kept him late at work and then late to the game.

Here are a few pictures of my "Pirate".

A Whole New Me...

If you have known me for very long you know that I LOVE change and one of the things that I change a lot is my hair! I have been long, blond with sprial perm, short blond, red, brown with highlights. I have even grown it at donated it to Locks of Love.

But, the one color that I haven't ever done is....

Black. Black with subtle "Wild Orchid" highlights!! I am getting daring in my 43rd year!

What do you think? Be honest! Really, I can take it! I want to know.

Updaate on Adam

Here is an email from my friend, Michelle. She is giving an update on her son, Adam.

Thank you all for your prayers! He is SO GOOD!

Hello friends:

I appreciate all of the prayers, kind notes and calls, it meant so much to Richard, Adam and myself. I wanted to give you a quick update on Adam...so often we forget to follow up when we've asked for prayers.

We were so worried that as we took Adam off medication prior to going to the hospital that our weekend would be filled with seizures....that did not happen. We actually enjoyed a very normal weekend prior to going to the hospital on Monday. Upon arriving at Children's in Cincinnati, Adam had his first seizure in Admitting. That day he had 4 more seizures each progressing in severity and length. They gave Adam Valium to end the last seizure (over 5 minutes is bad) which had the opposite affect than what you might expect....he was up all night. The following two days he was seizure free, but extremely tired, and was calm through all tests. Thursday he had 5 more seizures which were pretty bad, also 3 on Friday but none since...praise God.

Praises:
Adam had a lot of seizures that they recorded and got data on...this will help determine how we will move forward concerning surgery.

Adam was so unbelievably calm during the battery of tests it was only through the Grace of God!

I was unbelievably calm - many of you know the anxiety attacks that I got when I was in the hospital delivering Walker...none, and I slept....with the help of ear plugs of course.

Carolee handled Hudson (4) and Walker (11mos), cooked, cleaned and did all the laundry...what more can I say ;)

The seizures only occurred at the hospital....once we got home he hasn't had one since!!!

We were helped by so many...our wonderful neighbors that took Hudson on playdates and checked in regularly on Carolee, Adam's teachers coming to visit, my dear friend Stacey visiting twice, all the cards, balloons, video messages, stuffed animals, and notes from Adam's classmates....it was unbelievable!

Everyone at the hospital was awesome...the nurses, the doctors - we felt as comfortable as we possibly could.

We'll be meeting with the doctors sometime in April - mid to late - to discuss their findings. I'll let you know what they have to say...if we do go for the surgery it will be sometime in July or August.

Love,
Michelle and her guys!

A Prayer Request

Our dear friends, the Schultze's have sent out a prayer request for their son, Adam. Below is an email that Richard sent out.

Please, you wonderful prayer warriors, take Adam, Michelle, Richard, Hudson, Walker, and Carolee to the Throne of Grace.

You are all wonderful! Thank You!

We have some prayer requests for us.

Adam is in the hospital this whole week having tests done. We reached a point where medications were not controlling his seizures and we went for a consultation on having brain surgery to help resolve his epilepsy. The doctor mentioned two stages of advanced testing beyond the MRI and EEG's he's had done in the past.

The first stage involves a full week of hospitalization (this week) where he is weaned off of 3 of his 4 seizure medications to immediately induce seizures. It is working
since he had 3 today so far, 2 of them major. He will be monitored constantly to get detailed data on what is happening inside his head during seizures.

After these tests, the doctors will evaluate and decide whether to
proceed to the next step which is opening his skull and placing electrodes
directly on the brain. Once this step happens doctors are able to isolate
the seizure activity and then remove parts of the brain that cause the
seizures. They shared an example with pictures of a boy's brain that they
operated on who has now been seizure free without medication for 3 plus
years.

We hope to be at this phase some day.
Our prayer requests are that:

God would shield and protect Adam from the pain and inconvenience
of this testing; and that no harm would come to him during this week of seizure
activity.

The Lord will be with Michelle and grant her rest and strength as
she will be at the hospital constantly while doing things like helping to keep
Adam awake until 3am for the next couple of nights. She will need extra
grace to cope.

Our other children Hudson and Walker will not exhaust or tax
Carol Lee (Michelle's stepmother) who is helping at our house. She will
need extra grace to cope as well.

We love and miss you all.

All God's blessings to you.
In Christ,
Richard