Isaac's Big Adventure

Isaac has been doing fantabulous! We are even decreasing the amount of nebulizer treatments he gets during the day, which is always a good thing! I have been forgetting to bring the camera during some fun events that Isaac has been to lately. Right before Father's Day we took him to a party at Grandpa's house and he got to cuddle with some of his family member's who he had not seen in awhile. On Tuesday he went to his first ever park playdate with the ARC Parent to Parent program. It was great fun meeting up with a couple of Mom's who brought their super cute Down syndrome kids, I just wanted to scoop them up, they were so cute! I posted some pictures of Isaac going to the park on Saturday, which is just down the street, but we usually pack everything but the kitchen sink! This is what we need...... An excited cute boy!A double stroller that can carry Isaac and his equipment. This is called a sit and stand. It's much easier to push and fold up than a wheelchair. We will keep this for awhile!A portable oxygen tank, just in case his saturation levels don't stay up. Hopefully we can stay clear of high explosives while we are there!

Friends Through Seasons Of Change

Recently a friend who also has a special needs child mentioned how difficult it has been to connect with her old friends since her child came into the world.

Having a child with special health care needs has changed my whole perspective on life and relationships. When I see other Mom's talking about the latest tupperware bowl or what's in their spice rack, I want to close my eyes real hard and remember a time when my life was that simple.

Even though my life consists of nurses, appointments and medical decisions, it's actually nice to sit down and talk about the simple things in life. I'm thankful for those people in my life who I can have these simple conversations with. I'm also blessed to know a few people who I can talk to at a more deeper level. I know the relationship will endure even through the seasons joy of and hardship. I know when they ask me how Isaac is doing they really want to know.

This book called "Grown Up Girlfriends" has been on my shelf for 3 months and I finally got around to reading it. One chapter talks about how friends come in 3 categories, like in baskets.

Basket #1 are know-it-all friends. These are the ones who I'm more likely to walk through conflict with. They are the ones I'm comfortable sharing my true feelings with. They know the ups and downs of my life really well. I can probably count these friends on one hand.

Basket #2 are good friends. These are the ones who I can talk beyond the surface with. They may share a special interest or activity with me. I have some friends like these at church or recently through having a special needs child.

Basket #3 are acquaintances. They know a few facts about me, such as my name or that I have curly hair. They don't really know much about me and my life. I probably know at least 100 of these people!

Isaac's life has changed my perspective on relationships, but the cool thing is I've been able to still connect with the simple people who were in my life B.I (before Isaac) and also people I never would've known if it were not for him!

On the right side of my blog there are 3 generations of poetry. Check out Gammy and Autumn's poems about "The Cute Boy."

-Colleen

Email Delivery System

Is it just me or do computers make life more complicated sometimes??

This morning I discovered that everyone who is signed up for email notifications got a post in their inbox from 3 months ago. Since I'm not certain what would be causing this--if it's the actual program or maybe something is wrong with my computer, I deactivated the email delivery system for now.

I notified the email subscribers that I have kept their email addresses so that if I have any new updates, I can just send them the link by regular email for now.

Feel free to email me if you would like to be added to the list or have any questions. My email address is cbiscuit76@gmail.com

Of course regular "followers" with a blog/blogger/google account don't need to worry, this is only for people who are signed up for the email subscription.

Since I'm still rather new to the blog world, if anyone has any suggestions for a better email delivery program, please let me know what you have used in the past.

-Colleen

30 Seconds

30 seconds.....that's how long Isaac can sit up independently before he flops over.

He should be running, jumping, playing in sandboxes and doing all the fun things little boys do at his age, but he can't. I know it doesn't bother him at all, but sometimes I dwell on this and I go into this little pity party. I can't help but feel guilty as a Mom even though I've done the best I can with what I've got.

Isaac's neurologist told us last year that if he wasn't sitting up by the age of 2 years old that he most likely wouldn't walk. I really didn't like that comment. People telling us a probability without knowing for sure what the outcome will be really stinks, but I have heard them all......from not surviving infancy to not recognizing us, both of which have been proven wrong. When someone asks me if he will ever walk my answer usually is "Most likely not, but I'm not ready to give up hope."

Isaac may not run or jump, but he has come a long way since birth. If you can imagine, he spent a total of 7 months in the hospital his first year of life (4 months in the NICU and about 3 months in peds).The first year was spent just surviving and fighting many respiratory infections. It wasn't until his 2nd year of life that he started smiling, laughing and imitating people. Then by the middle of his 2nd year, he started waving and signing Mama and understanding commands with repetition. These were huge milestones for him and for us! Now we're starting to see that even though he isn't mobile, there actually is more going on in that little head of his than we realize. What will the outcome be? We don't know, but if he starts sitting up longer than 30 seconds...that will be a big milestone too!

-Colleen

Speed Racer

Weeeeeeeeeee!

Isaac's physical therapist let us borrow this little cart on wheels this week. I'm not exactly sure what they call it, but we call it his race car or his throne on wheels.

When big sister gets a hold of it she takes him on a wild ride!

Isaac is in another awareness video for Chromosome Disorder Outreach. Who knew that having a rare chromosome disorder would make him famous! Click here to watch it. Also click here to watch all 4 videos. He's in Video #3 too!

Have a great weekend and Father's Day everybody!

-Colleen

Daddy Time

Isaac and his pointy finger saying "wake up Daddy."

Since Father's Day is just around the corner I thought I would post some photos of Isaac's Daddy AKA my silly husband. He said in the picture above that he is doing an impersonation of Dr. Evil and Mini Me from the movie Austin Powers. OK so unless you have a strange and unusual sense of humor like us you probably have never seen it. Daddy is the best!

I'm finally over the "April Rose blog hoax saga." I will never be able to comprehend what drives people to do these things, but according to the apology letter, she's on the right track to getting the help she needs.

I've been taking Isaac for strolls to the park lately and sometimes I can't believe how much equipment I have to pack just to walk 2 blocks! Oh well, It's worth it to get us out into the sunshine.

-Colleen

Wordless Wednesday

The Boy In The Bubble?

Autumn with her awesome teacher Mrs. Holbrook
Hello all, so I thought I would type up an update while I have some time. We have good news and we all like hear good news don't we? Isaac had an in home assessment done through the state today and they decided to keep him at his current home nursing hours. Phew! I was sweating that one with all of the budget cuts that are going around. On a low note, Isaac's immunoglobulin levels are still very low. Are we packing our bags for Seattle? Heck no! The dr's office suggested that for right now we see how Isaac does over the coarse of the next 6 months infection wise and then from there we have the option of seeing a specialist in Seattle if we choose to take the next step, which would be IVIG therapy. He doesn't have "the boy in the bubble" syndrome, but he does have an immunodeficiency, which just means he is more susceptible than the average person to infections and viruses.

Autumn's last day of school is this Wednesday and she's so sad to be leaving Concordia. The above pic is of her and her AWESOME teacher Mrs. Holbrook. I can't say enough about the school and what a blessing it's been while adjusting to life with Isaac the past 2 years. It's right behind our house and when Isaac was at his most fragile moments that first year a teacher would walk her home. Next year Autumn will be attending NW christian schools, which will be a nice transition for her as we know families there from when she attended back in the preschool days.

Well that is all I have to report for now. Isaac is as healthy and happy as HE can possibly be for HIM today so we will take it!

-Colleen

The Big Screen

Yep.... this is the good life!
So Isaac got a super huge TV for his room this week!! He's loving it and likes to watch it while he's getting his nebulizer treatments. The night nurses are liking it too!

We have to be selective about the videos as he can get overstimulated easily, but he LOVES Baby Einstein...it's a more calming video for him and educational. This one he is watching is about sign language.

Monday's ENT appointment was a bit disappointing as I felt as if I was talking to a totally different doctor than the one I spoke to in February. The big scope of Isaac's airway is on July the 13th, but he most likely will just come out with a larger sized trach. I asked her about the possibility of us trying to cap him periodically to see how well he can breath around it. How else would we know unless we try it, right? She put a finger over his trach for a half a minute and said that he wasn't breathing well enough around it to even try capping. So here we are......on the road to.......no-where! Oh well!

She was talking about getting hearing aides--another thing to think about. We often find it hard to believe that he has moderate hearing loss because he's so sensitive to noises. I will be talking to the doc further about this as well as his speech therapist. This is a hard decision and one more thing I really don't want to add to the plate right now.

-Colleen