Isaac's Birthday & A Strange Phase I Went Through

Only 13 more days until Isaac’s 2^nd birthday! I can’t believe it! I’d like to say I have big plans, but I’m actually waiting to see how my Dad is feeling after having surgery on his arm yesterday. He fell on black ice while getting out of his delivery truck 2 weeks ago and fractured his arm. (ouch!)

I will assure you that Isaac will be getting tons of kisses on those sweet cheeks from his Mama for being such a trooper the past 2 years! It hasn’t been easy for him, but he somehow manages to still be the happiest kid on the block. When I’m feeling sorry for myself I just look at him and see how happy he is all the time in spite of his limitations. He’s my inspiration!

Although I’m looking forward to birthday festivities I keep thinking about this strange phase I went through right after his first birthday.

I tried to convince myself right after finding out Isaac’s diagnoses that even though it was hard, I would just “get over it” within a couple of weeks. As if I was Superwoman or something I spent the first year trying to stay strong, live in the moment and survive. The house was busy with nurses and we were in and out of the hospital. There was no time to dwell on emotions.

At the 1 year mark I went into this phase I like to call “where in the world did that come from?” Reality hit me like a brick and I had to sort through some unprepared emotions. Was this a bad thing? No, it was a great thing! Although it took me a couple of months to get out of my “fog” I came out better, stronger and more able to accept Isaac’s disability.

Maybe I'll visit another phase after his 2nd birthday, maybe I won't, but I know now that as much as I would like to call myself Superwoman, I'm not and I have to let myself go into that "fog" once and awhile and know it's OK!

But seriously, who could be sad for long with that sweet face!

K-marche' And Prematurity Awareness

Yes, that is a picture of my lil peanut at only 2 pounds 8 ounces.

So I'm not really much of a K-mart shopper, but it I needed a few things there this month and I noticed that they are taking donations for the March Of Dimes until May the 10th. I'm not sure if this is just here or nation wide. So next time you're shopping for a blue light special, don't forget to bring a few more dollars along with you. I didn't know until a couple of years ago that so many children can be born with genetic abnormalities, prematurity or other birth defects. Of course if they are born with these things they deserve a big giant smooch for being courageous and amazing kids. Also, if your kids were born completely healthy, don't forget to give them a big giant hug or call them up to tell them how much you love them because they are a walking miracle! (: On April 25th we get to walk on a team for our friend Michael who was born very premature and was just over a pound when he was born. Last year we walked with them and it was a lot of fun. Next year I'm hoping (in my spare time LOL) to make an Isaac team and get others to join the fun with us! Here is the link to the March Of Dimes http://www.marchforbabies.org.



Colleen

Mama Needs A Nap

Don't they look cute? I need a nap too as it has been a very busy week for me. Saturday was a fun day with Autumn (my daughter). We call it "Autumn and Mama day." I try and make this a day where just her and I go somewhere special together such as the movies, shopping etc. So we went to Build A Bear and she made a cute puppy named "Butterscotch" and then we oohed and aahed at pretty dresses and the pretty charms at the Claire's. Then I took her to the movies. Brownie (the dog) was feeling left out, so later we gave her a bath at the self dog wash and then she got rewarded with a new bandanna and a Whopper from Burger King. Can you say spoiled?? Doesn't she look pretty in her new attire? What was Sam doing? He was manufacturing his new invention called a "Coatrackbox." I will have to put a link on the side of my blog on that. He's very ingenious! Lynn (Isaac's home nurse) and I packed up on Monday and today as if we were taking a round trip to the moon and took Isaac to see the Pulmonologist and the Endocrinologist. The Pulmonolgist has Isaac on an antibiotic for a mild respiratory infection and his lungs sounded good to him. I called the office later to see about phasing him into therapy at the center, since I got so distracted that I forgot to ask. He said that for now he feels that Isaac is still too medically fragile and at high risk for respiratory infection to discontinue home therapy. Bummer! Anyhow, the Endocrine doc checked Isaac's growth and his length was 28.4 inches long. She said that was about the length of a 9 month old baby and he's 23 months (21 corrected), so he's just a peanut. She also ordered some labs for thyroid and growth. On a very very sad note I just received some shocking news this week that one of our home nurses was in a tragic car accident on Monday and died instantly. These nurses who come into our home and care for our son become part of the family and a part of our lives, so needless to say this is very sad news for me. She was very good with Isaac and loved reading him books. She will be missed! (:



Colleen

Baby Steps

It's almost Friday the 13th and you know what that means, don't you? Isaac's 2nd birthday is 1 month away!! Our sweet baby came into the world on Friday, April the 13th 2007. Since then Isaac has taken many baby steps. One of our biggest goals for him before he turned 1 years old was to have him smile and recognize us. Most parent's hope to have their children walking, talking and eating finger foods by then. Not us, we wanted interaction, not to mention less hospital stays! When he looked directly at me and smiled big around 9 months old that was huge. Now even though he can't verbalize much, when he's feeling well he has a lot to give and he's being more intent on signing bye bye, hi, mama and food.

Ok, so I admit, I'm only human and when I think of how delayed he is at almost 2 years old it is discouraging. Like most mom's with special needs kids I struggle with the what if's, but I have to remember that Isaac is going to do what Isaac is going to do in Isaac's time and we will take what we can get!

His lungs are still questionable due to head colds and teething. I had the date wrong on Isaac's pulmonology appointment and I was soooo glad because of the snow and the 9 degree weather we were having! It's not fun, let me tell ya having to drive a medically fragile child around town in the ice and snow. We will go this Monday, it should warm up to 50 degrees by then. Then maybe we can finally welcome spring! Yay!


Colleen

Everyone Can Dance

Thanks for the prayers! As you can see Isaac is feeling a little better and is dancing in his Johnny Jumper. Everyone should be able to dance, even if they can't walk! Since adding Prednisone (an oral steroid) to our bag of tricks, Isaac's lungs are better and he needs less oxygen.

Today I am thankful for:
Daylight Savings Time, even though I needed a strong Americano from Starbucks in order to function.

Sam and Isaac are looking pretty cozy watching NASCAR races together.

An awesome staff of home nurses!

Please pray for:
Wisdom on if we should sell and buy another duplex for a better school district for Autumn and an ideal place for Isaac's special needs.

Tuesday's Pulmonology appointment. That we get a bill of health to allow Isaac to phase into therapy at the center this summer.

I added a list of courageous kids to my site (email subscribers click on the subject to see the whole blog). These are kids I pray and think about every week. Not only are these kids brave, but the mom's are an inspiration too!

Colleen

Keeping Mom On Her Toes Tuesday

It's Tuesday night as I type and Isaac has been keeping me on my toes today. Both of his lungs are wheezy and the nebulizer treatments are not quite doing the trick. I think he may have caught a cold from me, which has turned into junky lungs. He must know that it has been almost 6 months since our last admit to the hospital.(September) I am going to call pulmonology tomorrow to see what else we can add to our bag of tricks here at home and hopefully we can stay away from there. Lil stinker is otherwise gleaming with smiles and laughing at Mom's funny sounds as usual. He laughs at me when I sip my coffee because he thinks the sound is so funny. Now all I have to do is sip my usual afternoon decaf and he starts to giggle. Silly guy! Autumn has been keeping me on my toes too. She is an otherwise healthy kid, but she was born with reflux in her urine and is very prone to bladder infections. Well the past 2 months we've been struggling with this and had to go in frequently to get her urine tested. She has an appointment next month with the Urologist to get this checked out. Isaac's lil friend Gabby continues to be in and out of the hospital for pneumonia and infections and I am sending a prayer up for them. Well I better go to bed!