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Tuesday, September 7, 2010

Loving school again...

Josh is back to loving school again. His first 4 days were this way too. Then we went 5 days with uncertainty (just about broke my heart, lol). Every single one of those mornings I had to let Joshua pick out the Mickey Mouse sticker of his choice. We would stick it right on the top of one of his hands. He thought it was so exciting! And this very much relaxed him going to school. The greatest part was, he would come home after the long 6 hours and the sticker would still be neatly stuck in the same place.

Today, after 4 days off from school (Friday he stays home for therapy & Monday was Labor Day), he was actually excited to go back. He was actually standing at the door telling me to hurry before we left. Then, when we were getting out of the car I realized we forgot to pick out a Mickey (mee-la in Joshua speak) sticker. I didn't draw attention to it of course and he didn't even notice. He hopped along the sidewalk to school and happily went with his teacher when we got to the drop off ramp. I looked back and he had a big smile on his face as he was climbing up on the bench to sit next to the other kids in his grade.

Let's hope this sticks. Hopefully he is adjusted now and will continue to love school. My refrigerator is growing artwork as we speak! It's way too cute!!

This is Joshua's "no more presents" face, lol

Wednesday, September 1, 2010

At this point in time...

Just a few things to remember...

1. Joshua's favorite, I mean FAVORITE, foods to eat right now are lentil soup (organic w/ veggies) and chicken! I am talking chicken of any sort. He just loves it! And thank God that he loves lentil soup too, because gross! But he really needs the protein, which is great. It is still so hard for him to eat enough so I am blessed and thankful that these are two things that he will eat without protest.

2. Joshua saw his first rainbow Saturday, August 28, 2010. He thought it was so cool. I will write a whole post about this later.

3. Since Josh started school he likes to come home and hug and kiss me all evening. These acts of affection are usually accompanied by an "I love you." I can't tell you how thrilled I am that my "non-cuddly" kid is now a love bug!

4. Josh prefers teen-ish shows over cartoons. I don't know if this is a good thing or a bad thing, lol. Among the faves are iCarly, Big Time Rush, and Sonny with a Chance. There's also Imagination Movers and Phineas & Ferb topping the list.

5. For the last 3 days Joshua has had to go to school with a Mickey sticker on his hand. He gets very excited about his stickers. Since he has been having a little difficulty with "mom bye," I think this helps him separate. It's like he has something from home with him all day long. Believe me, that sticker is still securely stuck to his hand when he gets home! I don't know how.

6. The last thing is actually the first thing I wanted to include. It was actually the thing that prompted me to get on the computer and write this post. Go figure it would be the thing I forgot! I've been sitting here forever, wracking my brain trying to think of what it was. But I can't. So, hopefully, as soon as I remember, I will replace this #6 with the actual thing I set out to write about.

Friday, August 27, 2010

My Somersault Kid...

Praise God for therapy! I guess PT has been paying off!

First Week in a Nutshell...

Joshua's first week of school was great. At least I think it was, lol. He absolutely LOVED it. He is up and eager to start the day at 6:30am without protest. Our community has a special gate to access the school so we park at the clubhouse and walk the rest of the way to his classroom. It is really nice. Josh holds my hand and is always excited to be going to "toowl" lol. That is, with the exception of today.

Wednesday, August 25, 2010

Sunglasses = Copy Cat = Time Warp!

This is too funny and cute. Joshua got ahold of my sunglasses a while back and he poked one of the lenses out. The single lense has been sitting in my nightstand drawer forever. Well, the other day he found the glasses again and popped the other lense out. Tonight, he found the glasses again, this time lenseless, and was wearing the empty rims around my room. He was hilarious. I grabbed the camera as quick as I could and this is what I got.

Look familiar??? You guessed it! Joshua is trying to copy off of Aunt Stephanie. And yes, it's a time warp back to the 1980's!

Monday, August 23, 2010

First Day Pics...

Pretty poor quality pics, but adorable. I can't wait to get a new camera!
You think I take a lot of pics now, lol. Just wait :)

Lightning McQueen gear? Check!

Sunday, August 22, 2010

Scary, Sad, Scary, Sad...

BUT EXCITED... Exhausted and my feet are killing me, but wanted to scribble this down real quick. Tomorrow Joshua starts the ESE Pre-K program at the elementary school!! This is for the children with special needs, like him, that qualify for this early program. And he will get an IEP (individual education plan). They can attend at 3 years of age and 4 years of age until they move into Kindergarden. I have been on my feet all day getting all of his stuff labeled, documented and packed. Thank goodness he's been sleeping since 7pm. The program is 5 days a week, 6 hours each day. They are treated just like the rest of the elementary students. This is an exciting program because he is going to learn so much and advance in so many ways... especially speech! At least we hope, lol. But it is such a sad event as well. My little baby, my fun buddy, is going to leave his mom! So I'm off to bed so that we can wake up extra early in the morning. School here we come!

My exact feeling: Sadness, as if my child is being taken away from me! Irrational I know, but what can I say? I've never given anyone, not even my own family, this much slack on the very short leash Joshua has been on. I know the benefits will outweigh my fears. I just have to keep praying and trust that God continues to keep Joshua safe and protected through these new adventures!

Saturday, August 14, 2010

A throw back I couldn't resist...

I was looking through my pics today, trying to find something specific, and I stumbled upon these. My heart melted, lol. What a cute little stinker! I forgot he was ever this tiny!

That smile is enough to suck you in for life! He was 7 months in these pictures (non-adjusted). I sometimes wish things weren't so hectic and stressful back then so I could actually remember these days. Looking back on it now, I'm not sure why, I can't find any vivid memories of life after the NICU. Is it strange that I don't even remember holding my baby?

Friday, August 13, 2010

Next Surgery...

I can't bring myself to schedule Joshua's next surgery. I need some strength and wisdom on this one. It was supposed to be done about a year ago, but his Infectious Disease specialist (who follows his lymph nodes to rule out cancer suspicions) suggested holding off on surgeries until he was cleared through Cardiology and Pulmonology first. This was because his lips and entire mouth area kept turning blue when he cried. She caught a glimpse of it during one of his appointments and it was alarming enough for her to send us for clearance. Hence his recent heart contrast study. Anyway, he has been cleared and went through with his ENT/Cardio procedures. Now we have another urology surgery. This one can be mighty grueling. I am definitely not looking forward to the recovery. I can't even bring myself to call the office to set it up. I HATE SURGERY! Maybe that's why, lol. Whatever it is, I can't hold off much longer. I just hate to put him under again so soon. They are magnificent, but surgeons often treat these procedures/surgeries as if changing their underwear... so casual, so routine and so normal. But to me, a mother trying to keep her piece of glass from shattering, it isn't all that easy.

Tuesday, August 10, 2010

Featured Video...

This is a video I made shortly after Joshua came home from the hospital. Nick's mom always said how resilient Joshua was (and is) and that kind of gave me the idea for this video. I wanted to put it up here since this blog is my new scrapbooking method, lol.

Sunday, August 8, 2010

Al Bundy Style...

Most would probably think this is an embarrassing picture to share. I just think it's plain funny. I guess that's the immature, child in me. LOL.

I may not have posted it if I had not had the constant thought of Al Bundy from Married with Children stuck in my head since seeing Josh sleep like this. So here it is. Joshua's first celebrity impersonation. :)


Just noting that I love tweaking this blog! I just finished a bunch of little tweaks... so time consuming. Maybe this will inspire me to blog more often, lol. Let's hope so!

Saturday, August 7, 2010

Maddie's Story...

Maddie's story saddened my heart today! This is what we preemie mom's spend our days fearing, even after we've accomplished the treacherous NICU. It is a never ending battle. But, in the midst of such a tragedy, the Spohr family conjured up some good. Check out their organization, Friends of Maddie, which helps families experiencing level III NICU treatment.

This is something to smile about.
What a beautiful girl, in life and after!

Go ahead and snag their button too!

Friends of Maddie

Something cool...

Sarah (my sister) found this pic the other day. I can remember back to when we took this. I remember thinking how ugly I looked and how fat. Of course, lol! Now, 4 years later, I LOVE this picture! It is one of my all time favorites from the pregnancy for some reason.

Believe it or not, I was between 2 and 3 months here. Seems crazy, but my belly grew fast for some reason. I like to think it was God's way of letting me experience pregnancy since it ended so soon.

Wednesday, August 4, 2010

Exhausting Fruit Loops...

I can remember seeing pics of myself like this when I was growing up. Here is Josh passed out in the high chair after finishing his Fruit Loops. Within seconds he went from spooning and sipping the leftover milk from the bowl to completely zonked out. I was shocked, lol. I had only literally turned my back for a couple seconds. He's too much. He gets cuter by the day. Before he fell asleep, he kept telling me "mee-wah" to let me know he was drinking his milk from the spoon. I think he was proud with accomplishment.

P.S. He is usually shirtless while he eats because he makes such a mess!! I've been known to wash a load of his clothes a day, soiled with chunks and spills from his breakfast, lunch, dinner and snacks. This is just easier, lol.

Friday, July 9, 2010

Mom's First Haircut...

My sister, who happens to be a cosmetologist, always cuts Joshua's hair. Recently, however, we've been having trouble finding a time when all the pieces fall into place and she can do it. So, Monday, after watching Joshua repeatedly push his hair out of his eyes, I pulled one of my crazy Melanie moves and got out my scissors. We are talking the kind with the yellow/orange handle, lol!! Anyway, the last time I attempted to trim his bangs I completely butchered them. It was embarrassing! But this time I thought I could do it... don't ask me why. Of course my sisters pattern was still there, I just tried to trim up the bangs, along his ears and the back. I wish I had a picture of just before this haircut. His hair has never been so long, truly.

For being my first full haircut, I think it came out okay. He still looks a little silly though. Nick said he looked like a bowl head, lol. And if you see him in person he often looks like Jim Carrey in the movie Dumb and Dumber hahaha! Poor child :)
Front & Back
Don't mind the juice mustache, lol, he was eating.

Late Father's Day Post...

I wanted to document this picture. I plan to print all my posts out one day and turn them into a journal or something to that effect. This is the Father's Day gift Joshua made for Nick. He had SO much fun making it. We happened to get a little speck of paint in the bathroom that I didn't catch the day we made it. Yesterday, Joshua noticed it and pointed to it, telling me "hannie." He was very excited because he remembered, just by this miniscule dot of paint, how much fun it was to paint with your hands and feet. Now that is a sensory accomplishment if I must say so myself!

Joshua's Beautiful Artwork!
this now hangs on our fridge and probably will never come down

A little glitter, a little paint, a little marker, a little crayon & a LOT of fun!

Father's Day
June 20, 2010
Nick's 4th year of celebration

Friday, July 2, 2010

Inspiration for us warriors...

I made another new friend, Jules , in the preemie mom community. Take a look at her blog here. I had to pass around a short, inspirational video that she recently posted on her site.

Even with the challenges, every day I get to be with Joshua is a good day! I certainly know I could have been dealt a much more heartbreaking fate. But the day I get to look at him all grown up, no health problems, developmental challenges, setbacks or obstacles to think of, now that will be a great day!!

Here are the pictures and article from the People Magazine feature.

When miracle babies grow up!
Click here for original article.

Sidenote: This was Joshua. 1 lb, 7 oz dropping to 1 lb, 4 oz after birth. The first thing the nurse practitioner said to Nick while running Joshua down the hall to the NICU as they were manually bagging him was, "It's a 50/50 chance."

Tuesday, June 22, 2010

Another home run for this little slugger...

Let me say, it has been one long day! Surgery went well. Both surgeons were there together and got the procedures done fairly quickly. Joshua's tongue was clipped. His vocal cords, airway and lungs were examined. The adenoids were partially removed (the surgeon said they looked really nasty, aka infected). His sinus was cultured. The heart scan was completed. They did have to use the aggitated (bubble filled) saline contrast, but they were able to avoid going in through the esophagus with the ultrasound equipment and he didn't have any averse reactions. So that was positive!

All in all, the amount of time he was in the operating room was pretty short... just about an hour. The completely horrifying part was that he had trouble waking up from the anesthesia. We waited for him in the recovery waiting room for over an hour and a half! This is a kid who usually pops his head up from the stretcher bed as he's being wheeled out of the O.R. I don't have to say that Nick and I were sweating bullets when he wasn't awake after the 20 minutes they say is the standard "wake up" time.

But, he did wake up, thank God!! He is super tired... didn't stop him from trying to jump out of the bed and run to the car himself though, lol. He slept in the car and he is sleeping at home in bed now. He is s trooper!

The results were a little confusing. The heart stuff was great. Cardio was able to see what he needed and is confident that the clip sealing off the artery that connects the aorta and pulmonary artery is tight and there are no leaks or tears. He just wants to go back to the office and review Joshua's whole chart and results before discharging him for sure. He is really a wonderful man. He gave us his cell phone number to call in a couple days and he shook both our hands and hugged us, lol. You've gotta love doctors/surgeons/specialists that truly care about your child and yourself. So that is that.

The results of the ENT stuff is what boggles our minds. It was already determined that Joshua aspirates thin liquids when he swallows. His water, juice, ect has to be thickened with a special food thickener. He also has a very low and raspy voice. This was the main reason the surgeon had to do the study. It was highly suspected that Josh aspirates because of a paralyzed vocal cord from a previous surgery, or because of a nodule or build up of scar tissue from all of the forceful intubations he has had. This part of the procedure was to determine which of these were the reason and the severity of the condition. However, he has none of these things. His cords are not paralyzed, there is a smooth, clear passage... no scar tissue, no nodules, nothing! His voice box looks good and so do his lungs. So then why the heck can't this kid protect his airway when he drinks??? The surgeon has no idea! So, the window to the unknown is opened again and we don't know what this means.

The other ENT results were that he was born with an extra bronchus, which apparently is a benign condition and will not be of any concern. And, hopefully the removal of some of those infected adenoids will help his nasal congestion and compaction. We have to wait 72 hours for the results on the sinus culture. We will see if there is infection there too. He has a deviated septum that closes off his right nostril... another reason he breaths through his nose at night. But that we already knew.

Here are some pictures of Joshua throughout the day.
What a handsome kid, even when he is feeling under the weather.
Click on image to view larger.

In the car and in the parking garage this morning

In hospital and getting BP taken before surgery

In recovery after surgery, showing mom his IV board

Playing with his Buzz balloon that Mommy & Daddy bought him,
and sleeping in the car during the drive home!

Passed out in bed at home

The goods our little guy scored today!

Surgery @ noon!

No energy to think right now... surgery is at noon. This never gets any easier!! You would think we would be used to this by now, lol. Scared, confused, sad, reluctant... shall I go on.

May God surround Joshua today and keep him safe through these procedures. Bring forth good results and outcomes Lord. Amen.

My Facebook status: Please think of Josh today. He's going into surgery at noon... multiple procedures, one of which is particularly scary. Everyone's prayers have always meant so much to us, and we see them work. So here I am, asking for them again! :)

Monday, June 7, 2010

Monday Memories Cont'd...

This memory is something I thank God about. I don't often remember that this happened because I was becoming increasingly ill at this time. However, for some reason, it popped into my mind as I was thinking of being in the hospital. When I was first admitted with Preeclampsia, I went directly to the local birth place. They started all kinds of junk on me... IV's, catheter's, steroid shots, magnisium sulfate (can I say YUCK!?) ect. When we realized Joshua was going to be born very soon after this I requested being transferred to a hospital that is one county up from mine. It houses a level 3 neonatal intensive care, which we were told Joshua would undoubtedly need. Rather than medflighting Joshua over there after birth, I wanted to already be there for delivery so he wouldn't have to take on that extra stress of transport. So, my doctor came in and spent the 2 hours plus that it took to sign me over to another hospital and they sent a ground transport ambulance to get me. I was getting sicker and sicker and feeling absolutely horrible at this time. The last thing I wanted to do was go to this hospital all alone. I was scared, I literally thought I was going to die and I had no idea what was ahead. The EMT/paramedic crew told us that Nick wasn't allowed to come with me on the ride and that I had to go alone. My worst fear! So we started begging them, lol. One of the men on the crew ended up realizing that we were 911 dispatchers and that we've actually communicated over the radio before. It wasn't long after when he decided there was no way he was letting me go by myself when I was that nervous. They got me on a stretcher, shoved me into the tiniest ambulance I've ever seen and Nick climbed in behind me. That was the longest drive of my life. I had to lay on my side the whole time (with IV's, magnesium and a catheter) and try not to vomit every time the bus bounced around. When I think about this, I remember a feeling of not being able to see out of my own eyes. I can still fuzzily picture the huge atrium of the hospital and remember thinking it looked more like a hotel. I thank God that the crew was so nice to me and that Nick was allowed to take the plunge into uncertaintly with me! I can honestly say that was one benefit of the job ;)

Monday Memories...

While driving in the car this morning my mind was taking me back to being in the hospital before Joshua's delivery. I realized how many memories I have that my over stressed, over crowded brain is going to forget soon. I often see other bloggers choose a day to write about something particular, so I thought that would be a good outlet for me too (yes, I am a follower at times). Anyway, I chose Monday partly because it happened to be the day I thought of this idea, and partly because the words memory and Monday both start with the letter M. So, I am going to try my hardest to post a memory from my pregnancy and NICU experience every Monday. Sitting here now, I already, for the life of me, cannot remember the memory I was having this morning in the car! For this reason, I am so excited to get these thoughts written down. Of course they will not be in order of how they actually unfolded, but at least I'll have them documented since this was perhaps my first and only pregnancy. As difficult, scary and heartbreaking as it was, it was still a very special time in our lives. I'm off to prepare today's memory (while my husband is cooking in the kitchen!)

Sunday, June 6, 2010

3rd Birthday Pictures...

I am out of words for today, but I wanted to post some pics from Joshua's birthday party before too much time elapses. We all know I am horrible at posting updates in a timely fashion, lol. It was a great little get together. Joshua loved it.

Lightning McQueen

Power Wheel

Cars Digital Camera

McQueenn Scooter

Sail Fruit Boat with Toy Story Figures

A Bobbie Cake

Sticking his finger in the cake

Mud Pie For Easy Eating