Quick update

I talked to the doc last night. She feels its best to re-test in two weeks, if it is still low she will send him to a hematologist/oncologist where they will follow up. She assured me not to worry, that a low WBC count can be caused by many things, even something as simple as a virus. So for the next 2 weeks, we pray those WBC come up!

dont be alarmed....

Tuesday Malachi went in for  his 3 year well child check up while there his pediatrician was looking of the medical form needed for school. She was transferring information when she noticed that last time they did lab work Malachi's hemoglobin was on the low side, but still within normal limits. She decided she wanted to order a CBC and a bunch of other blood work. Didn't think to much of it. I love that she is proactive and wants to make sure everything is perfect with Malachi.

Today I get a phone call from the nurse telling me they refiled Malachi's reflux meds. While I had her on the phone, I asked about his lab results. His t3 and tish were normal, some things were pending and she said "oh, his which blood cell count is low (2.9), I'll have the doc call you and see what she wants to do next." Freak out ensues. I've spend the last 30 mins on line research what low WBC count's could possibly mean and Im not liking what I am reading. Ugh. Im still waiting to hear from Dr. M but I am worried!!! Please leave me your thoughts, especially from mom's who have been down the cancer road with their children!!!! Im a mess.

Ipad?

With all this Ipad business going on, I feel the need to do a post. Recently Malachi won an Ipad from a4cwsn. We are so excited! Malachi has 2 verbal words, yes and no. He does sign but is extremely limited  by the weakness in his right arm from his stroke. Although he has made GREAT improvements over the last year and a half, he is still unable to rotate his wrist, isolate fingers and is often unaware of his right arm completely. Another side effect from his stroke is lack of anger management and we see this come out when he cant communicate his wants and needs with us. He hits, pinches and pulls hair to express his frustration. I completely understand how he feels, because I too get frustrated with him for his behavior. At the same time I understand why he is so angry, I would be to if I knew what I wanted but had no way of expressing it. So this Ipad will truly be a Godsend! We can't wait to work with Malachi's speech therapist to figure out which communication app will best fit his needs. He will also be on a picture schedule at school which there is an app for. We are honestly so thankful to a4cwsn and this gift they are giving us!! Our lives will change for the better, Malachi's life will change for the better and there are no words to express what that means to us!

Please got check out a4cwsn.com.Gary does an amazing job at reviewing educational apps, special needs apps and communication apps. Many of these reviews are done as a video so you can see how it works before you buy it! You can also apply to get an Ipad of your very own!! There are some exciting things coming up, so while you are at it check out a4cwsn on facebook! There you can see pictures of children who have already received their Ipads, get codes for free apps (Gary often posts free codes, but you have to be quick, they go fast!) and you can meet thousands of other parents who are full of knowledge!

Please don't let one bad apple ruin your faith in others. Give a4cwsn and Gary a look, you will be happy you did!

Gone, gone and Gone

Yikes, it's been way to long since I posted! Please forgive me. It is summer after all and that means craziness for our family! We were in Boston for a week at the end of June, came home for a week and then spent the next week in Door County, WI. The boys are crazy due to no scheduled, I am tired of living out of a suitcase and Josh has had enough of sleeping on strange beds. At last we are home!! Thank God! Now to catch you up on all thats been going on the last few weeks.

Malachi won a Ipad from A4cwsn.
Elijah is cruising along furniture and will be fitted for SMO's soon.
Josh got hired back. Praise God.
My car broke down while we were 5 hours away from home but it was fixed in 3 days for only $160.
The boys LOVE the sand, I however do not.
Malachi aged out of Early Intervention and we said good bye to all his therapists. It was a sad week.
Elijah started signing milk and more.
Josh, Malachi and I all celebrated birthdays.
My yard is still full of weeds, leaving us looking like the trash of the neighborhood.
Our pool is still green, I hope we get to swim in it this summer but i am not holding my breath.
Our flight home from Boston was canceled but they did book another flight which took us to Miami and then      home to Chicago. 6 hours on the plane, how nice of them!
The boys were on the news...yet again.
Malachi played at the park with little assistance from us.
Elijah still eats everything in his path and has started to gain some weight!
I've been crocheting and have created some really cool things. Esty is in my future!
I have so much laundry in my laundry room that I can't even shut the door.
Last but not least...every single one o Eli's medical bills has been paid!

That is all for now. I promise the next post will be soon!

3 Cheers!

We got the best news EVER this past tuesday! We were in Boston for Malachi's one year follow up to his Pial Synangiosis procedure. This surgery was VITAL to Malachi and his future. Pre-surgery his risk of stroke was VERY high (I was told it was more likely that he would have another than not), if not corrected the blood flow to his brain would get worse and worse eventually causing him to die. We knew the importance of this surgery and that without God's grace and the hands of a skilled and world renowned surgeon, his fate would be dismal. Early tuesday morning my sweet lil man was put to sleep for a cerebral angiogram. The Interventional Radiology team at Boston Children's Hospital inserted a catheter in Malachi's groin and ran it through a major blood vessel to the base of his brain. They then injected dye and watched it flow through the blood vessels in his brain. And flow it did, all over that brain of his. The re-routed temporal arteries stitched directly to his brain grew and grew. Now healthy vessels encompass his brain providing a healthy amount of blood to all areas. His risk of stroke is at 5%...5% that's all! Dr. Scott said the results were more than we could ask for and quit possibly the best he's ever seen. Yet another miracle God has worked in our son. We have few words that express our gratitude and even less that seem fitting enough. We are overwhelmed with gratitude to those who cared for Malachi while he spent time recovering from his stroke and surgery in 4 different hospitals. All the nurses, doctors, and support staff who used their God given talents and knowledge to provide Malachi with the best possible care. To our family and friends who have held our heads up when we were to weak to, who encouraged, listened, prayed and loved on us unconditionally, we are forever indebted. The smile on Malachi's face, the strength of his hug and the joy in his laughter is all because of you! I can't imagine walking this path with anyone else.

Perfection!

We have Malachi's IEP on Friday and I am happy to report it went amazingly well! We thought all of the purposed goals were appropriate and that they were truly looking out for what is best for Malachi. He will be getting 30mins of OT, 30 min of PT and 90 mins of speech a week (in addition to what we decide to supplement outside of school), once a week he will have inclusion for gym and library time. They also mentioned a possible need for a assistive communication device, so they wrote that in as well. And the best news of all...there will only be 4 kids in his class!! That is it! We live in a VERY small district (The entire school only has 120 kids) , which I LOVE! So all in all, it wasn't nearly as bad as I expected it to be. I would even venture to say it was as close to perfection as we could have been! In a month we will go and register him and then a month after that he will be getting on that big bus and off he will go. I better stock up on Kleenex now! My baby is growing up!

Away we went

Destination: Wisconsin Dells, WI

Purpose: To spend 3 whole days enjoying all that the Wilderness Lodge had to offer. 

Activities: Swimming, swimming and more swimming.

 Please check out Elijah. He quickly learned how to escape!

It was so nice to celebrate the end of Joshes school year (yes they are out crazy early this year) and Memorial Day with our good friends (Thanks Maugers)! We can't wait to go back!

Now that our first mini vacation of the summer is over, it's time to get into gear as we prepare for Malachi's first ever IEP! Friday is the big day and to say that I am worried is an understatement! EEK, I still can't believe this is happening, in August I will be putting him on a big bus and sending him to school! It honestly seems like just yesterday I was rocking him to sleep while singing "you are my sunshine", who am I kidding I still do it on occasion but now he actually claps for my less than stellar singing! ha I know these fears are normal, but seriously, he can't be old enough for school! I got his evaluation reports in the mail last week. It was so difficult to read over them! Ugh. I cried and cried. I don't like reading that my son is "severely and profoundly delayed" in expressive and receptive speech. Don't these people know what he has been through? The fact that he can make any sound at all is remarkable let along that he can walk, jump in the pool, and sign over 30 signs. Why don't they see this? Why is it always the negative? I know this meeting is going to be difficult, these strangers don't know Malachi like I know him. They haven't been with us on his journey to see his progress, all they see is what he is not doing. But they will in time and just like all the other hearts Malachi has touched along the way, they too will, will carry with them a special place in their heart that only Malachi can inspire!