24
Apr
15

Spring School Pics

I love that his school does pictures in the spring and fall. He changes so much every week!

  
We are having a beautiful spring although this weekend is a bit cold and rainy for me.

   
               

This is the new family team quilt for the Greater Cincinnati March of Dimes chapter. It made me catch my breath. Our walk is Sunday.

05
Apr
15

Happy Easter!!

      

 We are having a lovely Easter weekend!

Drake’s 1st Easter was on April 8th. He’d been home about two weeks.

It’s always been a favorite holiday of mine, and the memory of being home for his first one just makes it sweeter.

24
Mar
15

Happy Home Day! 3 years!

Today is the third anniversary of the day we brought him home.

There is nothing bittersweet about this day it is one of joy and celebration. I always have trouble getting excited on his birthday. I feel bad about it, and I’m working on it. 

Daddy left this morning for Orlando on a business trip. It’s the first time we haven’t all been together on March 24th.

But we are going to make a memory today! And we will get to FaceTime tonight.

Happy home day, sweet son!

   

   

And yes, mummy Drake still got a talking to about wrapping things on his head and neck but I had to have a pic, too. 

20
Mar
15

Socks for Ponseti

I saw this search term so I wanted to throw this out there.

In the winter, we liked the thicker Falls Creek brand white crew socks, but Drake is pretty skinny and they may not work for other kids if the ankle/shin part of the brace is tighter. I found these at Meijer. With crew socks, I always tried to avoid really big ridges. These would leave marks on his legs due to the necessity of strapping the shoes on as tight as possible, and when we did try this kind once it made him fussier in the brace, also.

In summer/not cold, the triple roll socks you can find in the toddler/baby section at Old Navy or Gap. Every once in a while, they have a sale of 5 for $1 or $1.50. I would stock up when I had coupons, reward cash, or these sales would occur.

Any socks that aren’t too tight on the shin with big ridges and that are tall enough to reach the bottom of the knee or top of the brace should work. We always stuck with white for easier matching and they seemed to make his foot sweat less.

We would wipe the brace out with rubbing alcohol in the morning once a week, and never had an issue with athlete’s foot or anything.

I would advise to be careful how tight you pull socks down on the toe though. Usually when he would get fussy, it would be because the sock was bothering him touching his big toe.

20
Mar
15

Star of the Week

This week at school, Drake was the Star. His preschool teacher has designated a week for each of her students with an interview sheet asking about them. Items such as “my friends,” “my family,” “my favorite book,” etc.

It was fun filling out Drake’s answers. I wish I had remembered to write it down or take a picture. I’m apparently the type of mom that pins a lot of the cute ideas on Pinterest, but I rarely actually use any of them.

Being the Star, also means you get a bulletin board put up that shows your answers to the questions and includes 8 special photos from birth to 3. The teacher has them show and describe the photos to their classmates.

I debated for a week on what photo to use for Drake’s birth. Definitely not his actual first photo like the other kids. It shows him in what looks like a ziploc bag while his Daddy talks to him as they decide if he needs to be intubated or not. The second photo isn’t much better for a group of three year olds. It’s our favorite NICU nurse assisting in his setup. He’s fighting the tube and kicking the foot with the pulse ox on it. After a few days the shots get better, of CPAP instead of tube and resting peacefully in the incubator, or should I just send the going home picture of a little over a month old where he looks like a teeny regular newborn? We were very lucky.

I picked out four that I didn’t think would traumatize his class, and then let him pick which one to use. He selected the photo we use on his March for Babies team page.

drake 2 days old

The rest of the pictures were easy. A pic of him and Daddy making his first beach sandcastle this past October. A picture of the three of us dressed as pirates at Mickey’s Halloween party. A picture of him in his 3rd birthday shirt with a Jake and the Neverland pirates wig on. In the snow up to his thighs. Riding his bike on the first 50 degree day of March.

His teacher reported to me that he did very well describing his pictures to his class. “This is me. I was sick so I was in the hospital. I needed help breathing so I had a straw.”

I think this road away from the NICU is all about our journey as parents. To our kids, it’s just their story.

12
Mar
15

Ponseti Graduate!

Drake’s feet looked amazing to his doctor and he is showing great flexibility. She decided we could stop night bracing at 3, and gave us great instructions on what to look for in case of possible relapse. His case never showed complex signs so we are hopeful.

I am so thankful for Dr. Ponseti and his method that saved my child from a lifetime of painful surgeries and loss of foot use.

We will be donating our last pair of “night-night shoes” to the Clubfoot Shoe Exchange and a family who may not be fortunate enough to have insurance to pay for their brace.

The brace is essential to treatment as it maintains the correction of the series of casts a child receives while an infant. Ideally, casting begins at two weeks of life. Due to Drake’s NICU stay, he started casting at about two months, but it was only two weeks past his actual age of two weeks.

Many thanks also to the Cincinnati Children’s Orthopedic team. We cannot thank you enough for your excellent care.

Now let’s go buy some PJ’s with FEET!!! HUZZAH!

 Hand washing clowns!  

 

Awesome feet!

30
Jan
15

Advocating for Your Preemie: School Years

We are entering a new, scary time in our family….dealing with public school and public school systems. D will be 3 in a few weeks. Back in October, he had his evaluation for public preschool. In Kentucky, you have to qualify in one area for a special need in order to qualify for public preschool and additional support services.

I was extremely disappointed in the way his evaluation was conducted. I was originally told it would be a 1.5 hour session, and we would need to come back to complete the other half. It turned into an almost 4 hour ordeal in which my 2 year 9 month old had assessments for OT, Speech, PT, and an IQ/Psychological evaluation.

The school psychologist was late, and so OT, Speech and PT were first. By the time he got to the final portion he was exhausted,  and it was lunchtime. Why did I let it go on? I don’t really have an answer for that. I think partly, it’s because so many of our (his dad & I) concerns for him have dealt with gross and fine motor issues.

Today, I received an IQ report that says he is mildly delayed and low below average, but not enough to qualify for services. That his score will probably impact him during his school age years, but not severely.

I just don’t see this. And his Early Intervention lead was in the meeting and agrees with me. So then my husband asked the best series of questions, how does this report impact him? Where is it stored? Who can access it? Do they need our permission?

I don’t really care about D’s IQ. I think standardized tests can be a tool, but for the most part it is just a snapshot of that day and how the person was performing.

We just want to help him the best we can. We are concerned that we have focused too much on motor and not enough on cognitive. And then I think that’s the preemie parent in us. We’re always searching for answers that aren’t there. We’re always wondering what we may have done wrong.

We just want to make sure we give him every opportunity to be the Drake he wants to be. That’s enough for us.

It’s been a rough week. Yesterday, we got some scary news at Ophthalmology follow up, too. Eye doc saw something very concerning, but D won’t be big enough for the pictures to fully diagnose and check it out until next year. I wish I didn’t even know about it. I need to find some new coping mechanisms for staying out of anxiety loops.




Drake’s 3rd Birthday

February 20th, 2015

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