NICU Reunion Picnic

Well, I started this post awhile ago & then Zach got sick & I got distracted. Anyway......

We had our 3rd NICU picnic & Zach had a blast. Last year he lasted about two hours with many meltdowns occurring. This year, we were there 3 1/2 hours &  Zach would have stayed longer.

He did have a big meltdown when we got there. I'm still not sure what it was about &  he was never able to fully explain it. We moved on, settled down & had some fun.

Daddy & Zachary

Zach & one of his primary nurses

Zachary & Mommy

Zach with Trevor & Nathan (& their mom). 

"Soft kitty, warm kitty...."

Happy Zach

Firsts

There are so many "firsts" with a child in the first couple of years. After two years old, they slow down & around three they come pretty infrequently. Tonight we had a first.

When I picked Zach up to have him turn on his humidifier (it's been his job for awhile), he gave me a hug. Now, that's not new, but he put his arms around my neck & gave me a hug. He has never used his arms before, he just used to lean into me.

It's been a long but sweet week with my munchkin. He had a temp on Sunday, 101.8. Then Monday morning at 3 AM his temp spiked to 105.5. He was still "ok", he was able to take his ibuprofen & I put him in the tub. He now tells me that he was very scared in the cold tub that morning : (   He had a highish temp for a couple of days & then that turned into a cold. He has been at home all week & is going stir crazy. In between the whining, fussiness & meltdowns (today) he has been so sweet.

He crawled into my lap the other night after a bath & said "We love each other very, very much". My heart could have burst with happiness that 1. He knows & feels that he is very loved & 2. he can verbalize how he feels.

A long & tiring week, but such a precious week at the same time.

Standard breakfast for sick kids after an early morning doctor's appointment. (He ate 5 bites, but drank half of the frappacino.....yay for SOME calories for the week).

Family Pictures

We had family pictures done in May. Here are my favorites.

I am so glad that this one turned out. I try not to focus on Zach's preeminess too much now, but I don't want to ignore it. Zach being a preemie was such a HUGE part of my life. My only pregnancy, my only child.......    I think that this picture perfectly captures where we started & how far both of us have come. He is my heart.

Potty training

Zach said that he was going to sleep in my bed naked tonight. He stripped off his fleece, footed PJ's (his choice of bedtime attire, not mine) & then his diaper & tried to crawl into my bed. Ugh what?!? He is daytime potty trained, but will happily go in a diaper if it happens to be on. However, he is still in his crib at night & wears a diaper. He is dry most mornings, but I don't feel like trying out the nighttime potty training gin my bed.

We did sleep through the night the last three nights (well, Zach did. I have a cold & have been coughing). That's the first stretch he's had of sleeping through the night since June 16th. Woo Hoo. Let's hope that it lasts. I did tell him that he will be sleeping in his crib tonight even if he falls asleep in my bed. NO way am I going to have what precious little sleep that I get interrupted by him.

Speaking of adventures in sleeping. Zach just came out & told me that he spilled my water on my bedside table. At least he told me. I thanked him for that, cleaned it up & back to bed he went.

This picture is how I got Zach to eat breakfast the first day that he wore underpants to school. He wouldn't get off of the potty until he peed. Too funny.

Transitions

Zach is starting his 4th week of big boy Preschool tomorrow. The first couple of weeks were pretty tough. I've never done well with transitions & it seems that Zach is that way too. The tantrums & neediness started the Thursday before the school transition (we had preschool orientation that evening). He started waking at least once a night (but up to three times) the night before school started & we've only had two nights since that he slept through.

He had his last Parent/ Tot swim lesson the first Tuesday (Erin usually took him, but I went in with him). He. was. a. mess! Other instructors were making comments about never having seen him act that way before. Ugh. He only does those spectacular tantrums for me. Awesome. He got upset because he wanted to put the red ball in the bucket & another kid got to do it (this tid bit is important).

Zach woke up the FOLLOWING Sunday at 2 AM crying about the ball incident. Boy this kid perseverates on stuff (sounds like someone I know......).

Overall though, it is going well. He is happy to go to school, gets excited to see the teachers & do the fun stuff (they get to go swimming every day in the summer). He had one big boy swim lesson so far & did great. The new teacher commented on how happy he is.

We're still having some issues with the transitions from car to school & school to car. I'm working on some stuff to help him with that.

Hopefully we'll both be getting some consistent sleep soon.

Zach is Three!!

We had a low key birthday for Zach this year. He took cupcakes to school on Thursday & wore his "Happy Birthday to Me!" t-shirt. His teachers made him a big sign for his birthday with his favorite topic on it....cars. I used it at home to help decorate for him.

 He didn't even bat an eyelash at the hanging balloons on the morning of his birthday, oh well, I thought that they were cool. I put balloons all over the living room floor & that's what he thought was his birthday present. So easy to please still.

We went to dinner & he picked "shrimp" to eat, so eat shrimp we did. He loved it.

                                            His Audi TT had to come to dinner with us.

                                                             Happy Birthday baby!

A year in pictures....

I totally stole this idea, I just love it. 

June

                                                          
                                                                            July

                                                                          August

                                                                      September

                                                                          October

                                                                      November

                                                                       December

                                                                           January

February

March

                                                                            April

May

And then there was the IEP....

the Individualized Educational Plan. Ugh. We had Zach's meeting on the 18th. Zach was evaluated by the school PT, OT, ST, Adaptive PE & the nurse. Overall doing well, he doesn't qualify for special education services at this time. That's great.

However....the school PT & his private PT are recommending continued PT as he still has a lack of safety awareness & the quality of his movements are still not normal. He can't get PT through the school at this time, so I need to start fighting with the insurance company again. Maybe with the dyspraxia diagnosis it will be easier than it was a year ago.

I am amazed at how much better Zach is now than he was a year ago. A year ago my insurance company denied him PT. Thankfully Regional Center picked it up. I can't even imagine where he would be now if he hadn't had weekly PT since August.

My plan for now is to keep him in swimming lessons & start karate. Everyone is really recommending gymnastics or karate as dyspraxia is helped by doing lots & lots & lots of physical activity. We also really need to find a place to live that has easy access to the outside & a nearby play area. I'm not sure how I'm going to manage that in this high cost of living area. Ugh, I have a lot to figure out.

For now, Zach has a balance bike that he can now balance enough to ride outside, that should help. He loves it & can manage 1/4 of a block right now.

I also need to say that I just can't STAND it when people (the NP, the doctor's) saw "Well, he is doing fine cognitively. If you have to choose between being ok cognitively or physically which would you choose?". You know what.....I. don't. want. to. choose! Yes, yes, I do know how lucky that I am that Zach is doing well cognitively & physically he only has mild issues (it is just luck, that's all that it is). I know. Then, I feel guilty that I want him to be totally fine. I should appreciate what we have (& I do, I really do).

It's just tiring. It just really is at times.

4th and final

Zach (& I) had his last NICU follow up appointment this afternoon. The most important part? We graduated! Seriously, we graduated.......wow.

We had another evaluation two weeks ago, so the results that I am posting are from both evaluations.

Zach is currently 35 months old (actual, although we are not adjusting age anymore....I'll do it one last time. He is 32 months adjusted).

Cognitively: Zach is testing at 37-39 months.

Language: Zach is testing at 42 months at least, but the test didn't go any higher.

Gross motor: Zach is testing at 31 months, has minor balance problems & his running doesn't look quite                                              
                      "normal", she actually described it as "awkward" (but he is much better than he was even    
                       3 months ago. It is like a light bulb went off in his head).  He was able to jump forward
                       over 4 inches today.  

                        

 Fine Motor: he tested at 34 months.

I was assured again that his "obsession" with cars is normal as long it is not exclusive to other activities. The NP said that neuro was appropriate in bringing up Autism Spectrum Disorder as it's good to not miss kids who are in the "gray" area, but Zach is not on "The Spectrum".

Now for stats:
Weight: 26 lbs (I thought that it was higher, sigh)  3-10%. Woot, woot! We are above the line!!!!!
Length: 36 inches, 10-25% Holy cow! (He grew 1.5 inches in 2 months!)

Overall, a great clinic appointment. I am feeling so much better about leaving Developmental Clinic & Early Intervention behind us now that Zach's balance is so much better & he doesn't walk into walls anymore : )

Zach & I got to stop over at the hospital & enjoy the Nurse's Week Ice Cream social. He loved it & I got to show him off to a few of my co-workers (I now work at the La Jolla campus, NICU is at the Hillcrest campus).

I love.....

I love that Zach calls it a sofa (not a couch). I don't know where he got it from, but I hope that he never stops.

I love that I got two spontaneous "I love you Mommy"'s out of him this week. It was so nice.

I love that he says "Dawná went to Chicago" instead of Mommy went to Chicago. Apparently it's unthinkable that Mommy would go away.

I love that he just spontaneously says "I"m so happy, my Mommy is back home."

I love that my 2 1/2 year old taught me that there is a Prius 2. I did look it up to be sure, but of course he is right.

I love how Zach says certain words like "doctor" & "Monterey". I love that he thinks that I am 5 years old, Grandma is 18, Erin is 3, Zachary is 2 & Daddy is 1. Hahaha. too funny.

I love that he had me put my shirt on him & then he ran around yelling "I'm a butterfly!!!!". That was just awesome.

40!

Happy Birthday to me! It's pretty surreal turning 40. I don't FEEL 40 & I don't LOOK 40, so it just doesn't seem real.

First of all, I am very happy to be turning 40 (it's better than not ever turning 40). I started my day by hearing "Hewp, hewp, I can't find my zipper!". Zach was stuck in his sleep sack & was trying to unzip it himself (he can, he just had a hard time this morning). Really, that was a pretty awesome way to be woken up.

3 years ago, I was pregnant & didn't even consider that my 40th birthday would have any other option. I didn't know that on my 38th birthday, my 9 month old (who was really 6 months old) would be diagnosed with a cognitive & gross motor delay (for his adjusted age). At that point I wondered what life would be like on my 39th birthday.

At 38, I was also trying to settle into the single mom role, the mom of an ex 25 week preemie who now had delays (not unexpected, but still). (I am so glad not to be 38 any more, that was a hard year......as was 37). The cognitive delay was quickly gone & the gross motor is just a small issue now. I am grateful for those years, as I became a mother & I found strength that I didn't know was there. I have settled nicely into my role & my life as it is. Without those two hard years, I don't know that 40 would have been as appealing as it is for me.

I spent my day running errands as I do every Monday, cooking, picking up, taking Zach to school etc. I spent my day hearing "Mommy drive the rainy, gray Mazda 626 to school!", Mommy, the Honda Odyssey is missing!", "Mommy, it's a BIG Ford Tundra TRUCK!" (can you tell....he likes cars?) and my favorite "I ride home in the sunny Mazda 626 with my mommy!"

I realize that my birthday post has really turned into a post about Zach, but that is my life. He centers me & he grounds me. For that I will be eternally thankful.

I leave with a picture of Zach doing his favorite activity......looking at cars.

Trader Joe's

Trader Joe's, how do I love thee. Let me count the ways......well, only one really matters.

You have wonderful frozen entrees that I can pop into the oven on a day like today (weather change induced migraine headache).

My son & I thank you.

Gearing up

Well, it's almost February. What does that mean? It means that we are getting closer to Zach aging out of Early Intervention.

I know, I know, you are thinking "Your 2 year old who is reading is in Early Intervention?" Yep. Zach has had a gross motor delay since he was 9 months old & while it did improve for a bit (he crawled at 8 months adjusted & walked just short of 11 months adjusted), he has had balance & coordination issues since November 2010. He was also delayed on sitting up & had high tone in his back at the time.

He has good days when it's not so noticeable & his orthotics really seem to help, but he has days where he is tired & falls... a lot (yes, I know that 2 year olds fall, but his is more than normal). His EI teacher notices it, the school Pt notices it, the Pt we see once a week notices it & also notes that he has "very poor motor planning"....awesome. Sometimes, he treats steps like they are not even there & sometimes he can do the stairways without trying to walk off of them or falling down them.

We go back to Neurology this month to see what she thinks. I need to bring video with me so that she can get a better picture of his quality of movement (it's off). We also start the transitioning process for EI. Now, if Zach does have Cerebral Palsy (gulp), then he should be able to still receive services.

Zach's pediatrician has been working with me & ordered a MRI back in November. It was normal much to her surprise. We also ruled out obscure metabolic disorders & it doesn't seem to be degenerative. Unfortunately Zach's symptoms are not so clear cut, so it's a hard diagnosis to make. Zach's pediatrician does think that he has mild CP & that his balance/ coordination issues are a result of his prematurity.

Duh. Seriously, it's like I thought that we were going to walk out of his being a 25 week preemie with a 142 day NICU stay unscathed. Nope, not happening. Yeah, I've had more than a few moments where I've had to tamp down my guilty feelings. I know that they are not going to help the situation & I need my energy to focus on everything that I need to coordinate for Zach.

It looks like we got the side trip in Holland after all.

Moments

I had a friend who made a post about this, but it hit me the other night.

I put Zach to bed (it was a good bedtime for us, not all of them have been lately...welcome to the terrible two's) & I said "Nighty-night Zach" & he said "Nighty-night Mommy". Oh, that moment, that precious, precious moment. How do I keep that moment forever?

I remember after we moved into the condo & I was holding him while he was sleeping, he was only about 9/10 months old adjusted & his hair was just starting to grow a bit. I was rubbing my cheek against the back of his head. I could still feel his soft, soft skin on my cheek & I knew that soon I would never feel that again as his hair would cover that skin. I wanted to hold that moment forever.

I take pictures & video. I try to post them on make comments about them, but it's of course not the same as being in the moment.

We had a moment today at SeaWorld. Zach was so excited about seeing the whale's jump that he just looked at me with sheer delight on his face. I want to keep that look in my memory forever.