Wednesday, March 25, 2009

No Real Answers

Well, here is my energetic little man, having a good time! If you can't tell by the way his lips are pursed, he's making engine noises! What a blessing!

I know many of you have called about his appointment yesterday, and for those of you still waiting, I'm sorry I haven't posted before now. I accidentally hit something on my blogger sign in that turned everything to Arabic! I don't know how to get it off - so if anyone has any ideas, please help! It must be only on my computer because I am using Michael's to make this post and everything looks fine! Since I can't read Arabic (I know, some homeschooler, right?), I am unable to figure out how to get on to make a post!

Okay, enough fluff, let's get down to what's important. Basically, we have no real answers. The sideroblastic testing was technically negative, but actually inconclusive. Here's why: when a person has this particular disease, iron enters the developing red blood cells and accumulates in the mitochondria, giving it a ringed appearance (sideroblast). William has been so depleted in iron that his body is not storing it, so there wasn't enough red blood cell storage in the marrow to look at. What we have to do now is wait for the chromosome testing to come in. That will tell us if he is missing anything, in whole or in part, and hopefully give us some kind of direction. If that gives us no clear direction, we will wait until May to see two more specialists: pediatric neuro ophthalmologist and pediatric mitochondrial geneticist. With the new testing that will be done here, we will need to decide if we are going to run the gene test. This is up in the air because this only gives us limited information. The true test must come from the bone marrow, which means watching for his MCV (Mean Corpuscular Volume) to come up and trying another draw later.

Also, nothing showed up in the Leukemia testing and, as long as all of his chromosomes are there in whole, he's looking good on that end.

Right now the good news is - his iron level is finally within normal range! He has been on a quadrupled dose of iron since January (of course, we had his iron doubled since November). It's nice to see it finally taking effect. However, the bone marrow showed that even though he is absorbing enough for daily use (RBC), he is not able to replace it in the marrow for storage (MCV). Our hope is that, with continued iron supplement, this will be corrected - however, Dr. Kirkpatrick said that it takes a very long time to build up the storage, simply because he is using it as fast as he is taking it in.

So, that's where we are. I hope I answered all of the questions. Feel free to call, email, or comment if I didn't. Thank you all for praying for our dear little boy. We are so grateful for all of you. May God bless each of you!

Soli Deo Gloria!

How precious also are thy thoughts unto me, O God! How great is the sum of them! Psalm 139:17

Monday, March 16, 2009

Warming Up

Well, it has taken a little bit, but it looks like William is starting to come out of his shell. We attended the Cochlear Event last week and he actually let Krissa (his speech therapist) hold him! Not only that, but he was the one who initiated it by reaching for her! That was Thursday night, then on Friday we had speech (twice last week) and he was SO funny! He was excited and laughing and responsive and it was so much fun to watch! I tried to get a video, but I didn't think about it until the end and it didn't turn out well. I wish I'd caught the bumble ball on video - I'm certainly going to try next time! Of course, Michael said he was probably so interactive because we went to speech twice last week and saw Krissa at the event. We'll see...
Pray for Krissa this week. She is on a missions trip in Mexico.
William also saw the Occupational Therapist last week for an evalutation. Looks like we'll be adding her to our list.

Okay, I know this is William's blog and Sarah and Abby are doing a great job keeping up the family blog, but I just had to post this picture of my littlest man. Look how big he's getting!

"But let all those that put their trust in Thee rejoice: let them ever shout for joy, because Thou defendest them: let them also that love Thy name be joyful in Thee." Psalm 5:11

Tuesday, March 10, 2009

Procedure Complete

Well, the bone marrow draw is finished (whew)! William went right to sleep and woke up well. After waking up, he had a bottle of milk, then he was ready to play! He's been his normal sweet, playful self at home this afternoon.
We should know about Leukemia by tomorrow - no news is good news, right? The sideroblastic testing will take a little longer. It is not common, therefore only certain radiologists read it and it has to be sent off (along with several other tests). We have another appointment in two weeks to get all the results. At least the hope is that they will all be back by then.
We have been incredibly blessed by each and every one of his doctors and all of the staff that we have dealt with. Everyone has been so very kind and helpful, sweet and thoughtful. We are so appreciative of the care we've received from his providers. Though everyone has been great, I must say, it is easy to tell that St. Francis is definitely geared for children. We felt very assured that we were in the best possible human care.
Here are several pictures from our day:
We started off with an exam from Dr. Kirkpatrick. You can see the playground equipment out the window from his exam room. See what I mean about geared for children? They also have an indoor play room.
Next up was an IV and blood draw for more lab work. They taped the IV to his hand and he wasn't sure what he thought of it until Daddy got one, too. Okay, things aren't so bad now!

While waiting for William's procedure to be done the girls worked on school, then studied anatomy while they took apart this human model. Sarah wasn't too thrilled about dissecting a human (even if it was plastic) and thought the squishy parts were "just gross!" She watched from the other side of the room. I'm thinking midwifery might be out now?

After the procedure, waiting for our precious boy to wake up...

Back at home and back to his sweet self...he sure does love his little brother!

"Many, O LORD my God, are thy wonderful works which thou hast done, and thy thoughts which are to usward: they cannot be reckoned up in order unto thee: if I would declare and speak of them, they are more than can be numbered." Psalm 40:5

Bone Marrow Draw

(Michael's email)
I will be out of the office tomorrow to be with my family at St. Francis hospital where William will be sedated for a bone marrow draw from his hip. We have to be there at 9:00am and the procedure will be conducted at 11:00am. There will be a battery of tests run on the sample but the one that we somewhat expect to be found is sideroblastic anemia ataxia. Big words, but it means his mitochondria are not doing their job and therefore various parts of his body do not function as originally designed before man’s fall.
We appreciate your concern and continued prayers. Knowing who knit him together and who it is that heals, miraculously or by the hand of man, brings peace to the heart when your little one is wheeled behind a door.

We will update the blog as soon as we can and in the future when results return.
"For thou hast possessed my reins: thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well."
Psalm 1139:13-14

Friday, March 6, 2009

Continuing in Prayer

Isn't that a sweet kiss? That is "Pappaw," my precious grandfather, who I am so glad my children have the opportunity to know. They love him dearly and he loves them! His knees have been bothering him for some time now and he is looking at replacement surgery in the near future. Please be in prayer for him.

I received a phone call from William's pediatric neurologist yesterday. We appreciate her so much. We really feel that she has taken a personal interest in William. It must be hard to be a doctor and go home at the end of the day and leave your work at the office. Well, she hasn't done that with William. She's prayed and thought and studied and worked on his case until now she thinks she's found the issue. She has gone above and beyond, even looking through my nephew's medical records (Riley had many of the same conditions). His symptoms are all pointing in the same direction. Because of this, we have decided to not pursue the muscle biopsy at this time, as that will not tell us anything. We are going to go forward with the bone marrow draw next week (we're looking at Tuesday) and it should confirm the diagnosis. After the results are in, I will post specifics, as there is no point in all of the speculation at this time.
Dr. Norman also confirmed yesterday that William's "episode" was most likely a seizure. A dear friend of mine told me that her son's seizures begin like that.

So here is how we are asking you to pray for William at this time:
*William is still sick (14 days now). Please pray that he will overcome this quickly and it will not turn into pneumonia (so far so good).
*speech therapy will continue to be beneficial to him as he learns to listen and talk
*nystagmus will not affect his vision
*tremors and seizures will not continue
*wisdom for his doctors/therapists
*sedation/bone marrow draw to go well

Also, we would ask that you pray for our family as we go through this. We are all very concerned for William. I cannot describe the pride I feel as I think about my children and their help to and love for William and each other, especially during these tough times. I am humbled as I realize how good God has been to us. Children truly are a blessing from Him and I am so joyful to be surrounded by so much love. This brings me to another prayer request. Please pray that any remarks we receive will be seasoned with grace. I know there will be people who think we should not have any more children, but I pray that they will keep this to themselves. We believe it is God who opens and shuts the womb, not us. That conviction will not change. I find it impertinent when people tell us that by having lots of children, we run the risk of having one with "defects." This is offensive because it suggests that by not having perfect health a child is less of a blessing. It is deeply insulting because it suggests that Sherrod (Juvenile Diabetes) and William have a lesser value. Well, they are indeed valuable to Michael and to me, to their Heavenly Father, and to their siblings, who all love them greatly. None of us can imagine life without them, nor would we want to try.
Every life has a purpose and is valuable (Jeremiah 29:11). It is the LORD who gives life, it is the LORD who takes life (Job 1:21). Blessed be the name of the LORD!
There are so many Scriptures running through my mind to post today, but I think I'll sign off with this one:

"Thus saith the LORD, thy redeemer, and He that formed thee from the womb, I am the LORD that maketh all things; that stretcheth forth the heavens alone; that spreadeth abroad the earth by Myself." Isaiah 44:24

Tuesday, March 3, 2009


Dr. Gustavson
PT with Karrie

All of the mitochondrial tests are in and the results did not leave us with any answers. The lab said to be sure we would need a biopsy of the muscle. Dr. Kirkpatrick had mentioned doing that with the bone marrow draw. Yesterday, Dr. Gustavson said it is entirely possible that William had a certain type of seizure when he zoned out the other day (it could have even been brought on by tiredness). William has also developed tremors. Right now he doesn't have them all the time, but the nystagmus wasn't all the time when it first developed either.
We have a new decision to make. It was suggested that we could wait until after seeing the neuro opthalmologist to do the bone marrow draw and muscle biopsy (since this is a surgery and invasive). However, it has also been suggested that we move as quickly as possible. The problem is that the first available neuro appointment isn't until May. That seems like a very long time to put things off. I will spend the day making phone calls. Please be in prayer with us for direction.

"O LORD, I know that the way of man is not in himself: it is not in man that walketh to direct his steps." Jeremiah 10:23