back to school

I went back to work today. I missed my little man. I am worried about this year. There were many surprises when I got back to work and most of them not good. I am hoping that my worries are unfounded!

Back from Lansing

Gabriel and I went to Lansing this weekend. My little brother and his girlfriend flew in Friday night. It is SO good to see him.

Saturday I happened to call one of my best friends who lives in Lansing to see what she was up to only to find out that another best friend happened to be in town! How exciting. Gabriel and I spent most of the day Saturday with them.

Today was Party day! We had a special dinner with Grandma, Aunt Billi, Mom, Dad, Nick (my brother), Cindy (his girlfriend), Brett (my sister), Gabriel and I. Aunt Billi picked up some ice cream cake for us to have. She got Gabriel special Banana ice cream cupcakes. As you will see from the pictures he LOVED them!

We all missed Gabe but he had to work on Saturday and was not up to making the long car ride for a night.

My parents have a little pond in their front yard. Gabriel LOVES to watch the fish and splash in it.

YUMMY birthday banana ice cream cupcake!

Meeting

We had out IEP (Individualized Education Plan) meeting for Gabriel today. I am sure that it is not called an IEP when the child is not in school but whatever, I am tired tonight. The meeting went very well. Gabriel does not show enough of a deficit right now to have a plan for anything other than OHI (Otherwise Health Impaired). They are able to put him under this because of his heart surgery, eating issues and other health things.

Gabriel will be receiving PT (Physical Therapy)and OT (Occupational Therapy) each once a week. We still are taking Gabriel to ST (Speech Therapy) in Holland. He will get ST here at the house once he starts to talk. ST in Holland is working with his feeding as well.

I was very happy with the plan. I am excited that he will have therapy at the house twice a week. The more help he can get early on the better chances he will have! With being back at school I worry about his progress. I know Gabe works with him very hard but I still worry. Knowing he has the extra help makes me feel better.

Good news

We went to Lansing today to speak with the surgeon. He thinks big Gabe is healing very well. The pain that Gabe is still feeling off and on down his leg and in his back are showing that things are healing. He also released Gabe to do as he wants with the knowledge that some things are going to hurt and to take that into consideration. Gabe is so excited that he gets to bike again. I am so excited that Gabe gets to bike again.

Gabriel spent the day at Mimi and Papa's house. He has learned that he has more freedom there. He crawls everywhere and tries to get into everything. They have almost gotten everything Gabriel proofed. Less to worry about at o-dark-thirty when I drop him off on my way to work.

Beach day

Gabe and I took Gabriel to the beach today. Gabe's dad (Papa) came out to visit. Here are some awesome pictures of Gabriel and Papa playing at the beach. Gabriel would stay in the water all day if we would let him.

"cake"

I do not have any pictures of Gabriel eating his cake because he has zero interest in cake. His daddy, however, LOVED Gabriel's cake.

I made Gabriel bananna pudding instead of cake because I figured he would enjoy that. Here are some pictures of his "cake" eating. Do you think he enjoyed it?





A short video of Gabriel's feelings


Before losing Daddy's Livestrong hat at Meijer today, Gabriel enjoyed sleeping with it in his mouth... Mental note, run to store tomorrow and replace Daddy's hat.

funny story

I guess my story can be called funny. Gabriel decided to show us how big he is for his birthday. Sadly, it was not exactly what his mother and father would have wanted.

I got up yesterday as soon as I heard Gabriel awake and rushed down to wish him a happy birthday. Instead I got the surprise of my life. There sat my precious boy with out a diaper and covered in nastiness. He had never shown interest in the Velcro of his diaper. At some point in the night he decided to be interested and off came the diaper. Lucky for me, Gabe is still home from his back surgery. I was able to call him down to bathe Gabriel while I cleaned up the mess.

That little stinker! He got a scrub down first thing on his birthday. From now on my little stinker will be sleeping in pants over his diaper!

We had an OB appointment today. The babies heart sounds good. I have another appointment in 4 weeks and will schedule an ultrasound for shortly after that. Soon we will know if Gabriel is going to be a big brother or a big sister... hehehe, Yes, I know that is not right but it sounds funny none the less. We are so excited to welcome another little one into our crazy lives.

Gabriel is one year old!

Who would have thought we would be where we are and who we are today? One year ago today I was more than ready to welcome our little one into this world. I worried if I had enough clothes, the right size diapers, enough blankets, ect. Then at about 8pm one year ago today I began to have contractions. By 9pm we were on our way to the hospital to meet our little man.

At a little after 11:15pm I delivered our little bundle of joy, without the doctor (Gabriel was in a hurry to meet us). The room fell with a hush and a whisper among the nurses. The doctor had a quiet conversation with the nurses before telling us the news, "We think your son has Down syndrome, we will do some blood work and know for sure in a few days".

I worked with our county track and field special Olympics from the time i was a freshman. Even before that I was watching them with my classes through middle school. Once in college I came back and coached. By the time I was in 6th grade, I knew I wanted to be a special education teacher. In college I became a member of an amazing group called Best Buddies which worked with adults (19-25). In Michigan we educate people who are in special education until they are 25 if extended education is needed. In 2005 I graduated with a degree in Special Education (Emotionally Impaired and Learning Disabled) from Western Michigan University.

I was not new to the basics of Down syndrome but I was of the belief that people in their 40's had children with Down syndrome not 27 year olds. Once you see Gabriel's face you can see why we were in love with him no matter what huddles we would have to face. We did not completely have time to process the news, things kind of go in fast forward for us. We had Gabriel at Hackley in Muskegon, MI, they do not have a NICU there. They kept Gabriel at Hackley for four days and realized that he needed more special care. At four days old Gabriel got his first ambulance ride to Devos Children's Hospital in Grand Rapids, MI. By the time we arrived at Devos they were able to tell us about Gabriel's heart condition and his blood condition that makes him more susceptible to Leukemia. The 14 days Gabriel spent at Devos seemed to take forever but looking back they flew by.

Gabriel has been a blessing in our household. He is an amazing little man. He always brings a smile to our faces. He has an amazing personality. I remember holding Gabriel at Devos, looking into his face wondering how we would get through his heart surgery and how we would make it to one year with all of the uncertainty. We have blown through one year and are on our way to two years. I want to remember and enjoy each moment of it! Gabriel teaches people wherever he goes. Most of all he has taught his daddy and mommy!

Gabriel a little bit after he was born


Gabriel having skin to skin time at 10 days old with daddy


Gabriel napping on mommy


ONE YEAR LATER







It has been a long birthday!

Happy Birthday Gabe

Yesterday was Gabe's birthday. Gabriel got a birthday present as well. We took some pictures to share.

Gabriel eating some of daddy's birthday cake


BigBoy Gabriel and Daddy


Chilling


Gabriel's early birthday present!


So fun


Pure joy

back in Grand Haven

We made the two hour drive back home. Gabe is having pain from the surgery. They had to cut through a lot of scar tissue so this is to be expected and in the coming days it will become less. He is still having NO pain in his legs. He is so excited to have moments where he is comfortable. He slept last night better than he had in a long time. It may have been in part because of the drugs but he was OUT and not rolling around moaning.

Thank you everyone for your thoughts. We may be reaching a even point where we will get to avoid the hospital for a while. The staffs are nice and all but I am darn tired of hospitals!

Is it time to go home yet?

Gabe is back in his room. He is still pretty out of it. He said is feeling a lot of pain in his back but is amazed that he is having NONE down his leg! Good sign as far as I am concerned. His back is going to hurt, that is where the surgeon did his work therefore it is suppose to hurt. His not having pain down his leg for the first time is a huge bonus!

Once Gabe is up and about we will be able to go. Right now he is talking complete nonsense so it will be a few minutes :).

operation update

I just spoke with the doctor. He cleaned up more disk. He found a little few fragments of disk and cleaned them out as well. He also found that Gabe's nerve was hooked to scar tissue. Every time he went to separate the nerve from the scar tissue Gabe's leg jumped. So a combination of the few fragments of disk and the scar tissue were causing Gabe the pain.

The problem is that there is no way to stop scar tissue from reattaching to the nerve. The surgeon cleaned out more disk in hope to prevent this from happening but only time will tell.

Now we wait for a hour, until Gabe starts to wake up then I get to go see him.

another surgery

Is it bad when you can make your way to the cafeteria with out following the signs in a hospital? How about if staff recognizes you from the last time you were in the hospital? Sometimes I feel like we are at the hospital at least once a month.

Gabe just went back for his surgery. I honestly hope they are able to remove everything that is pinching his nerve. He is in so much pain, I just want him to be comfortable. It will never be back to how it was before he herniated the disk and broke off the 13 mm piece, because they are going to have to go back through scar tissue and such to get to the object. They are hoping for a simple surgery but aren't sure, it will depend on the object, the amount of scar tissue and getting the scope at the correct angle the first time so it doesn't have to be moved.

Gabriel is having a fun day with Grandma Hubert at Eaton Rapids High School. Even though students aren't back yet, there is still a regular flow of people for him to impress. I packed his glasses for Grandma to try to get on his face. I figure he will have them on a whole 5 seconds all day :).

My cell does not work in the hospital so it is turned off. I will work on returning calls as soon as Gabe is at home and comfortable.

FYI Gabe is in red slippers again. Red slippers are so that staff know that when they see a person wearing them they are to escort them back to bed because they are a fall risk. I think that is pretty funny! Gabe also has his cool white tights on to prevent blood clots. His favorite!

Gabe wearing his party hat, waiting for the party to being!


On a side note we celebrated out 3 year anniversary yesterday. By celebrated I mean we acknowledged it, a little much going on right this second to celebrate. We are planning a long weekend in Mackinaw Island in October to celebrate it.

Gabe's birthday is on Saturday. I am hoping he is feeling good by then, I know that would be the best gift EVER at this point.

We have glasses!

Look at my little hot stuff!
He is too curious to keep them on his face for any amount of time. Not seen in the pictures is my hand holding his hands down so that he wasnt tearing them off of his face. he already moved the nose pieces. Lucky they can be moved.

Do these make me look smart?


Ya, I know I am sexy! Stay back ladies, one at a time.


Where is my superman cape? Mom must have left it in my drawer.

Big news

Gabe will be having another back surgery on Thursday. He had a 13mm piece of disk taken out of his spinal column and a herniated disk fixed in July. There is something close to where the disk piece was hitting his nerve. The doctor could not see this when he did the last surgery because the scope does not look at that angle. He did not see it on the first MRI because the 13mm piece was in the way. He was able to see it in this last MRI thank goodness. So on Thursday they will go in and take whatever this object is out so that his nerve is no longer being pinched. Surgery is at 2, we report at noon.

I got a call today when we were driving to Gabe's doctor in Lansing, GABRIEL'S GLASSES ARE IN! I will be taking the little man to get them first thing in the morning so that I have time to pack and get ready for another round of surgery. The little man is going to work Thursday afternoon with Grandma at the local high school. He should love that, attention!

I had an OB appointment scheduled for Thursday. By the time we got out of the doctors office in Lansing the OB office was closed. I will be calling to reschedule. Over all everything seems to be going well with me for now.

I hope the good news starts to roll in ;) We could use some good news for a while!

Hurricane in Michigan?

Okay, so the winds were only 80-90 miles a hour but still... Gabriel and I watched the storm roll in last night. It went from a 90 degree hot and humid day to STORM in about 5 minutes.

The winds were so strong they took two large branches out of our tree in front. One almost landed on my car (that we are currently trying to sell). Gabe came upstairs to watch the storm. He saw that a third larger branch had broken off and was working its way out of the tree. He decided to move my car. He ran out in the middle of the huge storm to move the darn car. Lucky he is fine, the car is fine and that darn branch is still hanging on in the tree. Gabe then came running inside to tell me that there is a tree down on the corner and in the road. He ran down the road to make sure that the tree had not hurt anyone. All the while limbs are blowing off of other trees.

The storm did not last more than 20 minutes but it left the whole neighborhood looking a mess. Nobody was hurt in these couple of blocks. Further up our street, several miles, another tree fell on a car and killed a young man, injured his female passenger and the infant in the back seat. :(

We lost power very quickly during the storm and did not get it back until about 1am. Gabe was unable to get his evening sleep because it was so darn hot in our house without power. Poor Gabriel was so thrown off by everything he did not get to sleep until around midnight. Over all we are all find and well.

Gabe outside after moving my car trying to get our branches out of the road.


Looking down the street at the downed tree and all of the downed limbs.


Everyone looking at the big tree that was blown down in the storm. It only took the clean up crew a hour to get there and have the tree cleaned up. Thank goodness because the traffic was not being careful and we worried there would be an accident.


Some of the branches down. Looking at the world in the light today.


I parked my car back in its spot last night so Gabe could get his out of the driveway.


I dont know if you can see it but this is a picture of the darn limb that is waiting for another time to fall out of the tree. Hopefully not ON anything besides the ground!


What is a blog with out some pictures of my little man?

Amazing day

Shortly after having Gabriel and finding out he was blessed with Down syndrome I attended a Down syndrome conference in Chicago with West Michigan Down syndrome Association. I met two women who's little ones had just had AVSD repair. They have been an amazing source of inspiration and understanding in my life.

Cathie Thomson is the proud mother of Ian and Cathy Harm Thompson is the proud mother of Lily. Both women live in Ill. Cathie happens to have family who live close to us. Gabriel and I got to meet her, Ian, her two other lovely children and her mother today. Gabriel and Ian shared toys and watched each other a lot.

Gabriel must have been paying close attention. Ian sits on his own and holds his own bottle. Sure enough when we got home Gabriel sat for 5 minutes on his own. Later in the evening I set his bottle beside him like I do every night to see if he will pick it up. Not only did he pick it up but he fed himself. He fed himself 3 bottles this evening.

Cathie's daughter took a lot of pictures so I did not take many. When I get them I will post them up on here as well.

Really quickly before we go to pictures... Many of you have seen that Adrienne leaves me messages on my blog. Her little son Bennett had his AVSD surgery this morning. He appears to be doing well. Please keep them in your thoughts! I just read his blog and he is now off oxygen and holding strong. Good job Bennett!

Gabriel and Ian checking things out -


Gabriel and his crabby pants watching Ian -


The boys sharing toys -


Gabriel holding his own bottle -


Sorry about being sideways -

We have a new toy

Well, Gabriel has a new toy. Occupational Therapy found it in their office from a study that was done years ago. Nobody is sure what the study was but never the less we are the proud owners of a baby treadmill. Gabriel took his first steps two days ago. He has loved to stand up for a few months now. He decided to take two steps on Monday. Now he gets to take a lot of steps. It is pretty cool!



The doctors office called Gabe. We have an appointment scheduled on Tuesday next week to see what is going on with his back.

Looks like back surgery again

Gabe has never been without shooting pain down his leg even after surgery. We finally got my insurance to understand that he did need another MRI. MRI took place today. We were able to get a copy of the MRI before the doctor read it. When comparing it to the other MRI it appears that the disk is still budging. The real reading will be coming in the next few day but it wont come as a shock when we are scheduling back surgery again.

Here are two MRI pictures of Gabe's back today-



This picture shows the older MRI (pre-surgery) on the left and the MRI from today on the right-


Gabriel and BigFoot have a new game. In the morning I go to Gabriel's room to say good morning before going to make him a bottle. Biggie has figured out that I leave Gabriel's bed open during the few moments it takes me to get a bottle. They now cuddle in the morning. Goodness :)

The "Cat Stopper" wide open-


The boys doing their morning cuddle-