Friday, July 30, 2010

the stolen Therapy Board

I admit, I am a stealer. Some time ago I saw a post, don't know where and I haven't the faintest idea who it was written by. The idea was amazing and I knew one day I would steal it. Well, today is the day I want to introduce you to my friend...the therapy board!

This is my version at least. On it is a calendar of the month where we will keep track of the boys weekly therapy. In the hanging folders will be the boys therapy notes from the therapist's and then in the horizontal folders are each of the boys "things to work on this week." After each therapy session I will write out what we are to be working on for the week. The main reason for this board is to keep me organized. Malachi alone has 6 therapies a week then add on Elijah's 2 and we have people at the house all the time. This will also help Josh. Now he will have a place to look to get caught up on what the boys did in therapy and what we need to be working on with them. He will no longer have to ask me. Ahhh...Such a good idea, many thanks are owed to the person I stole this from...now if I could only remember....

Mothers instict

So we didnt go to the ER last night. Josh and I talk over all the information that Dr. Smith in Boston and our pediatrician here gave to us and felt that Malachi didnt NEED to head to an ER last night. We decided to wait and see what his blood work comes back looking like this morning. He hasn't had a fever in 24 hours and is acting normal. I have a feeling (and im usually right 99% of the time) that the antibiotics he is on will do the trick.  Boston said we should notice less discharge by sunday. If in fact it improves we will know that the antibiotics are working and that it is not a sub cranial abscess.

Whats next? We wait for blood work results to come back and decide after that. We will keep you updates.

Thursday, July 29, 2010

Just another bump in the road

My post title is a little...um...shall I say, misleading? A bump in the road is usually something you can see coming such as a pothole. Our life has been filled with invisible bumps in the road lately. Let me fill you in.

Malachi has been a beast child the last 2 days. Im not kidding his sweet smile had fire and his halo sprouted horns. I thought I was going to die. He cried and cried and cried and after about 5 hours of temper tantrum after temper tantrum I no longer felt sorry for him...but for myself. I chalked his no nap up to the 2 lovely additions making their way into his mouth and his fever to his cold hes been sporting the last, well, all of his life. In all seriousness i had a day for H E double hockey sticks. Im sure his day was not glamorous either. After busting out the straight jacket (not literally but I did have to hold down his flailing arm and legs to get him to relax) to get him to fall asleep I knew tomorrow would be a better day. HAHA I woke up this morning to the same monster and all I wanted to do is go back to bed. Unfortunately I couldn't as we had an 8:20 appointment with the eye doc 2 hours away. I got Eli up and gave him his milk (oh the joys of my youngest son holding his own bottle) and proceeded to wake Malachi from his slumber. What did I see when his sweet head peeked up over the crib? Puss, nasty yellow puss. I felt as if the grim reaper had just walked in the room and was about to give me a death sentence. The incision on Malachi's right side was infected, suddenly the events of the last day made sense. I knew this wasn't good. I quickly call his Eye doc to cancel and then called his pediatrician to get an appointment. After that I got on the phone with Boston.

So whats the verdict? Malachi has an abscess. And tomorrow we go to Chicago to see the Neurosurgeon who diagnosed malachi with Moyamoya. They want to rule out a sub cranial abscess, which is severe and would require hospitalization for IV antibiotics. Ugh x's 2,000,000. So don't want him to have to go through more stuff. So wishing these invisible bumps in the road would just disappear.

Like always we will just keep moving forward. Praying for a positive outcome.

Update: looks like we are going to the ER tonight. Neurosurgery can't get him in at clinic tomorrow. I feel like Dori...just keep swimming, just keep swimming....

Wednesday, July 28, 2010

getting there

Thanks for listening to me whine on my last post. It has been one of those weeks. Thank God it's almost Friday! My husband is a teach and has been home with us all summer but this week he is gone from 5am till 7pm at a conference. Thus the reason for my foul mood. I need to get used to not having him around to help, talk to and venture outside the house with. He will be home next week but then it's back to school!! I so enjoy our summer's together and the fun things we do with the kids, its difficult for  all of us when he goes back and this week was my first taste of it.

Anyway, Malachi had PT today and I voiced my concern about him not progressing to walking. Well it looks like we are going to try a walker. He walks great with a push toy but that allows him to lean forward and not use his lower trunk. A walker will go behind him and curve to the sides allowing him to hold on but forcing him to stand up straight. I am crossing my fingers that this will help and he will be following his friends around in no time!

Elijah continues to impress our PT. Hes got great strength. He has been getting up on his hands and knees for a few weeks now. He is struggling with sitting as his ribs are still really high up. She has been doing some mild fascia release. In other words he is to tight which prevents his muscles from connecting. She thinks by this time next week he will have a lot more lower trunk control. So we continue to work on tall kneeling and side sitting. Another major accomplishment for Eli is that he is holdin his own bottle now!

Hope everyone is having a great week!!

Monday, July 26, 2010

Standing still

I'm in a funk. No, this doesn't happen often but when it does? Watch out. I have been struggling with Malachi lately. I fell like he is NEVER going to get pass this stage in life. The hitting, the throwing toys, the pulling hair and laughing all the while. What is a momma to do? I am at a loss of how to discipline this child. I don't think cognitively he understands why he can't do these thing. All he knows is he gets a reaction out of me and thats good enough for him. I need help! What worked for your kids? Does anyone have any magic potion's or tricks? I'm desperate and will try nearly anything (horse tranquilizers are out of the question, sorry friends).

Im also struggling with his slow development. Ugh. I want so desperately for him to be walking but hes not. I feel like he has been so close for the last month, yet still nothing more than 5-10 steps (on a good day). He will not transition into standing on his own but will stand alone for 1-2 mins if I set him like that. He has orthotics but im not convinced they do anything. I feel like his PT could be showing me more things to do. I think he could try a little harder but hes so dang stubborn and crawling is much less work. Wanna know what else, I wish he never had the stroke. I wish the stroke didn't leave his right side parallelized, I wish he didn't have Moyamoya. I wish he didn't have to fight so hard to put a block into a container. I wish he could tell me what he wants. I wish I didn't feel this way right now.

Right now I feel like things are standing still. The sun rises and sets yet nothing changes. The next day holds the same things as the last and all we ever do is therapy. I HATE feeling this way but in my attempts to be authentic, here it is. yikes...please pass soon!

Saturday, July 24, 2010

Name Day

Today we headed down to Chicago for court. Josh and I have to serve Elijah in order to adopt him. We essentially sued him. We got up early and took the train to the city. One we arrived at the Daily Center we headed up to the sheriff's office to serve Eli after that we headed up to the courtroom with our lawyer. My mom, brother and our best friends joined us for the exciting day. We were sworn in and then talked to the judge for a few mins. She was wonderful and fell in love with the boys. We were in the courtroom for all of 5 mins. After that Elijah was officially ours! Although it doesn't feel like anything has changed, he has always been ours, he now has our last names!!
This was taken right after we left the courtroom. No cameras were allowed in court.
Our best friends and Malachi's best buddy, Bryson, joined us!
Group shot, with my mom and brother
Us with the Judge.
We went out to lunch afterward and did a toast for Eli. He slept through the whole thing!
Malachi wanted to "cheers" as well!

Happy Name Day Elijah!!! 

Tuesday, July 20, 2010

Gratitude

Let me start off by saying that I have been working on this post for weeks now. It's has taken me hours upon hours to get these words down and this post it not something I take lightly. This is my heart, written with passion, tears and an believable amount of humility.

I am a thankful person, at least I think I am. My life, at least up until lately, has always been easy. I've never been in need of anything. My parents have always been there. I don't remember a single football game (I was a cheerleader), softball game, badminton tournament or band concert my parents haven't been at. I always had more than enough "stuff" and never needed anything. Someone once told me I was "born with a silver spoon in my mouth", maybe I was, but my parents worked VERY hard to provide more for my brother and I  than what they had. Yes, I got a car when I turned 16 and my parents even paid for my insurance. Never once have I taken any of the previous for granted. I am beyond thankful for all of it and my parents know that. Im sure, in my selfish teenage years, I had my moments of entitlement. Who doesn't? I'm sure I have forgotten to send my fair share of thank you notes. I am human.  Despite my flaws, I do believe, I have ALWAYS shown gratitude.

When Josh and I decided to adopt Malachi we had a very realistic understanding of what we were "getting ourselves into." We knew it wouldn't always be easy, what ever is? We encountered those who thought Malachi would be a "burden and a mistake" but we also encountered those who whole heartedly accepted him into our family as our son. In the first few weeks after we brought Malachi home we struggled with the nay sayers. Our hearts ached for people to see Malachi the way we did. We KNEW he would prove them all wrong (and he has). What we never saw coming was the unbelievable amount of support we would receive over the next year.

Recently Josh and I were talking about Malachi and his heart surgery. We had decided to have Malachi dedicated in church the weekend before surgery. The dedication was beautiful. All of our family and friends were there to celebrate. We were over joyed and soooo thankful that so many people came out to show their love and support. Surgery ended up getting moved back a week so we were able to attend church one more Sunday. After the service a older couple came up to us and handed us $150. We have never seen them before and haven't seen them since. We have no clue what their names are or why they chose to give us money. I cried all the way home. I have never had the opportunity to give them a thank you note but my eyes well up with tears when ever Josh and I talk about them. Our thankfulness goes deeper than words on a simple piece of paper.

Then I think about Elijah and his heart surgery. We couldn't get into the Ronald McDonald house and didn't have the money to stay in a hotel for a week. We had a complete stranger from a church we have never heard of come to the hotel and pay for 2 nights. We have countless stories like this, of people stepping up to help, just because. They never expected anything in return.

Before we left for Boston friends of ours held 2 Benefits for Malachi. We were able to raise enough money for 2 trips to Boston. Family, friends and complete strangers got together to help not because they had to but because they wanted to.

Our gratitude is much like those who have chosen to help us along the way. We are not bursting at the seams with thankfulness because we have to be, but rather because we WANT to be. It's a choice we make daily, to be thankful for every situation in every circumstance. Please know that just because we don't say it daily or write it as often as we should, we are forever grateful for YOU! For sharing your love, your friendship, your time, your talents, your homes, your, money, your gifts, your wisdom and your life with us. From the bottom of our hearts, WE ARE THANKFUL!

Monday, July 19, 2010

All about Eli

We got some VERY exciting news today. Friday we go to adoption court to make Elijah an official family member! Thats right friend, he will now be the proud owner of our last name! He has always been our son and have never thought of him as anything other than that. However, court on Friday will make it official!! We are so excited! To celebrate all things Eli, here are a few newer pictures of him!
John Stamos
Donald Trump
Not sure who this is...
parted down the middle
mohawk
Oh my sweet smiley boy
Laughing at daddy
Oh how he melts my heart!!

Sunday, July 18, 2010

1,2,3,4,5!!

Yesterday was Josh and I's 5 year wedding anniversary! We had big plans to celebrate with a movie and dinner, but our plans were sideswiped when we both woke up with the flu! So instead of going out, we sent the boys to my parents and we celebrated with hours of laying on the couch watching cake boss and drifting in and out of sleep. We sure got the "in sickness and in heath" portion of our vows down pat!

All day I was remembering back to our wedding day. The excitement, the nervousness of being the center of attention (not such a fan), the joy, then fun and for those of you that were there...the heat! Yes, just like yesterday, our wedding day was HOT, ridiculously hot! In our wedding album there is a picture of all of the wedding party in the limo and my feet were in the cooler! Very lady like, I know. In all our wedding was perfect.

The past 5 years have been perfect as well. We have fought, we have laughed, we have welcomed 2 children home, we have had family members pass away, new ones born, we have been through more surgeries and hospitalizations than we like to talk about and through it all we have battled it together. There is no one else I would rather laugh with, no one else I would rather cry with...I married my best friend and that is the best happy ending ever!!

Sunday, July 11, 2010

Sew fun

We are home from Boston and settling in quickly. We have had a flood of visitors stopping by since Friday, they all want to lay kisses on Malachi. Everyone has commented on how good he looks and can't believe how quickly his recovery way! We can't believe it either and are still at a loss for words at what truly happened 2 short weeks ago.

Malachi has been getting a lot of attention lately. 2 large incisions on your head will do that for ya. Everyone wants to see him, squeeze him and marvel at his strength. Poor Eli has been coming up short in the snuggles category. Yes he gets ample hugs and kisses through out the day, but family, friends and strangers flock to Malachi and often bypass Eli and his squeezable cheeks. Do any other moms out there with medically frail children struggle with attention given to them? Ugh, it makes my heart sad, but I know one day soon Eli will be stealing the hearts of many. My littlest superstar has started getting on his hands and knees! Yes, at 8 months old. Eli you will one day have your spot in the lights, thank you for so humbly allowing your brother to own it right now.

Before we left for Boston, I got a sewing machine. I made a few pillow cases and a little blankie for Eli. I enjoy sewing but as a beginner I am limited in the things I can do. However, today I tackled a taggie blanket. I think it turned out pretty good!! Eli loves his new soft snugglie!

Tuesday, July 6, 2010

Im this many...

Malachi-
       We can hardly believe another year has passed!! Your life thus far has been nothing short of a miracle and your dad and I are so proud. We love your smile, your giggles and the way you pose to have your picture taken. We love that you are stubborn and that you let nothing stand in your way. We love the joy you bring to each person you meet and love you set upon their hearts. We love that you have no idea just how special you are or that you are changing the world with your gentle presence. We love how you splash in the bathtub and how you sign along to the itsy bitsy spider. We love how you wobble across the floor in an attempt to walk. We love how you throw your arms around our neck when we ask for a squeeze. We love everything about you!! Thank you for teaching us unconditional, self sacrificing love. We can't wait to see what the next year holds!!! Keep fighting our little peewee!!

Love Mommy and Daddy!
Happy 2nd Birthday Malachi!!

Today we are celebrating all things Malachi. I cant believe he is 2! This year he has learned about 25 new signs, how to crawl, pull to stand, cruise, walk independently, stack toys, draw, do lacing beads, puzzles, put things in and take them out. His brain is a sponge and he soaks in all that we say and do. He is growing way to fast...Praying for a marvelous year!!!

Monday, July 5, 2010

An update

Malachi continues to do well. He is slowly getting back to normal and we are seeing more and more smiles. I still can't believe that he was discharged after only 3 days!! He is on tough little man! The last few days have been very hot here in Boston so we have spent most of our days relaxing in our hotel room and swimming in the pool. 
Eli is liking the water more and more. He has enjoyed spending so much time with his Grandma too. We have been so thankful she is here to help. 
Another one of my little peanut. We need to work on the looking at the camera business.

We took Malachi's bandages off a few days ago. It was the first time we got to see the incisions. It was difficult to see them for the first time. 

 This was the side the Dr. Scott did and the side that Malachi had his stroke on. Don't mine the tape residue that he refuses to let us clean off.
This is Dr. Smiths side. Whoever shaved his head must have been a new at it because they nicked him a bunch. Each incision is about 4-5 inches long and he has about 30-50 stitches in each side. Yikes. Im guess  they will be pretty nasty scars! 

They both appear to be healing nicely. We will go back in to see Dr. Scott before we leave so he can check on them and also check he neurological function. We have seen a few periods of memory loss which could be a few small TIA's. His memory seems to come back after a few hours. We continue to pray that he will have no further strokes!!!

Friday, July 2, 2010

Give me a D

We have been discharged!!! I can hardly believe it! I dont have time to post a lot now. I will write more later.