Archive for June, 2013

27
Jun
13

Vacation

We are going on our first family vacation! We still have not heard from EI about D’s results, and we should probably save our savings. But…sometimes you just have to go for it and live life, right?

We’re all very excited for this week away. Slightly less excited about the plane flight with a 16 month old. 

We’re heading to Arizona and the Grand Canyon. I’m sure we’ll have lots of interesting adventures and beautiful pictures to share when we get back.

I am going to try my best not to worry over delays and therapy, and just enjoy my little family and the fact that we made it this far. 

This time last year we were going through 23/7 bracing and worried over his hernia, and I really was not doing well. There were a lot of sleepless nights and tears as I tried to process his prematurity and my body’s failure. I wish I had taken the time to get help, but I am thankful to be feeling so much better this year. 

We leave tomorrow, and get back next Friday, so we’ll be on “internet silence”. Enjoy the summer, ya’ll! 

Advertisements
25
Jun
13

Arrrrrrrggggghhhhh

Today was Early Intervention evaluation day. I did like our evaluator, but I have to say I’m starting to think my state’s rules on qualifying really suck.

Based on our post-eval discussion, I think D is going to end up one of those kids stuck in the in-between. I honestly feel like finding an isolated spot and just screaming at the top of my lungs for an hour. There is nothing more frustrating and scary than knowing your child needs help and being scared you won’t be able to provide it.

She agreed to some of the same issues I believe we need to be concerned with and even brought to light something I hadn’t yet caught on to.

Of course his NICU follow-up report came in the mail TODAY. Two hours after it could have been useful.

So GRR universe. My body may have failed my son, but I’ll be damned if my mind will. He WILL get the help he needs if I have to work three jobs to get it for him.

I haven’t felt this angry and frustrated since the day I got the Synagis appeal denial letter last fall.

We should hear by the end of the week if he qualifies. Because he is performing at the low end of his adjusted age. He may not qualify for EI until after 24 months. I do not want to wait until he’s 2 to address gross motor and speech delays.

Tomorrow, I will start investigating private options, how our insurance would handle it, and obtaining the referrals needed.

20
Jun
13

Chicago Adventure

We had an AMAZING time in Chicago on our first family overnight. Drake was great in the car, and we made it to Daddy’s meeting venue with plenty of time to spare.

Mommy and Drake spent the day at Frontier Park in Naperville. They had a free children’s concert and we climbed at the playground, took a walk, and finished with a picnic.

We picked Daddy back up and headed through rush hour traffic downtown to our hotel. After checking in and unloading, we headed to Hard Rock for dinner.

The awesome host gave us a large corner booth. It was perfect for a kid who’d spent most of his day in the car and it didn’t overlook any other patrons.

D bopped and grooved to every song that came on, and DEVOURED a potato boat from our combo appetizer.

The next day was spent exploring the Magnificent Mile and taking a tour of Wrigley Field. We did learn that with a 1 year old you don’t fit in nearly what you expect to, and that pre2’s Drake is a pretty awesome travel buddy.

20130620-130503.jpg

20130620-130702.jpg

20130620-131102.jpg

20130620-131123.jpg

20130620-131151.jpg

20130620-131228.jpg

20130620-131301.jpg

20130620-131334.jpg

20130620-131508.jpg

20130620-131533.jpg

17
Jun
13

Happy Father’s Day

Our Father’s Day fun was delayed a few days. Drake was sick all last week, and so we have some awesome family moments planned for our short jaunt to Chicago. Daddy and I are so very excited about this first away family adventure.

My husband is awesome. Friday night he had a “Dudes Night In” with Drake and one of his friends so I could go visit my girls and see a precious 3 month old and friend I haven’t spent much time with since D was born. She had a preschooler, so her house was off limits through all of our RSV isolation periods.

Since we needed to stay in, we decided to have an indoor campout Saturday night! We blew up our air mattress and had pjs, a Eureka marathon, and snacks.

Sunday morning, Drake gifted Daddy with his new “casual kilt” and I ran out to Frisch’s for some biscuits and gravy to bring back to the boys.

We had a blast just hanging out together this weekend in spite of our son’s sniffly summer cold. Wednesday will be our big city adventure. We’ll take the train to Wrigley from our hotel downtown for a tour. Then back to the room for a nap. Then some lunch and shopping on the Magnificent Mile, and a walk on the shores of Lake Michigan and Navy Pier.  Then we’ll head back to Cincy to pick up Gammy’s dog and head back to our home in NKY. No pictures of the sleepover, but I’m sure we’ll get a bunch of our adventures in Chicago this week.

It’s a good preview of what our BIG vacation to Arizona  and the Grand Canyon in two weeks will be like. First plane flight and week away from home. Trying to stay excited and not nervous! I’m still thinking about getting a prescription to be able to present to the TSA guys for his high cal formula needs. 🙂

12
Jun
13

Mommy Guilt: EI

There’s a lot of second guessing going on in my house right now. With D’s low birthweight and left c lubfoot, I could have tried to qualify him for early intervention services a long time ago. I asked the questions at his well visits and his first NICU follow up clinic, but since it wasn’t pushed very hard we opted to wait.

Of course, now I have to wonder if we waited too long and that extra year could have helped him. Despite his Neonatologist’s telling me that the work I’m doing with him has nothing to do with his low muscle tone and gross motor delays, I feel responsible.

His appointment for evaluation is set for Monday, so if anyone that’s done this dance before has any tips I’m all ears and eyes. 🙂

To add to the mommy guilt buffet, we went on a tour of his school for next year on Friday and Monday he came down with a yucky stomach virus. Fever, running at both ends, the whole nine yards. I know we’ve been taking him out in the world more after over a year of isolation and he could have picked it up anywhere, but way to make me second guess myself and his readiness universe!

Today, he is playing and resting much better, so I think we are through the worst of it. Just in time for our 2 days to Chicago with Daddy during a business trip next week. It will be our first overnight away as a family that isn’t at a hospital! We’re staying downtown and plan to take a tour of Wrigley Field, visit the Lincoln Park Zoo, walk on the shores of Lake Michigan, go to Navy Pier, and shop on  the Magnificent Mile. I can’t wait for our first big adventure!

 

 

07
Jun
13

One Step At A Time

Never again will I post BEFORE we go to an assessment or appointment.

So we have the good and the not so good.

1. Low muscle tone and hyper flexible joints are holding back his gross motor skills like walking. The team also thinks its causing pain/discomfort when sitting still, so it’s why he has trouble focusing on things like eating.

Suggested: Get enrolled in Early Intervention and if he’s not walking solo in 3 months (18 actual/16 adj) we need to consider AFO options after a consult with PT.

2. His verbal skills are awesome. 11 words and going.

3. His weight/height are on his personal curve and increasing at a rate that pleased the neonatologist.

4. They want him in the follow up clinic program until at least 2 actual. Next appointment in 6 months.

5. We toured his future preschool today. He has to be off the bottle completely and walking independently for the half time 18-24 mo class. The will give him his extra calorie formula in a cup as needed and have cared for preemies previously. Plus, Asst. Director is a family friend.

So now to set up the EI evaluation, and hope.

06
Jun
13

NICU Follow Up

In a few hours, I take Drake for his second NICU follow up clinic. There’s a chance that this time he will be discharged from it. I don’t know whether to feel happy he’s doing so much better than last November or scared that if something develops over the next year it will be that much harder to get him help. I think I just need to learn to not borrow trouble. I’m hoping since we agreed to be part of a study last visit that they’ll bring him back one more time at 2.

We’ll start with a hearing test. He wasn’t sitting up on his own yet at the last appointment, so they couldn’t do part of the test. He was 8 months actual/6 adjusted. The last visit was just 3 weeks after his hernia repair surgery, and he really took off in December developmentally.

We still struggle with weight gain. He was 17.8 lbs at his 15 month wellness a few weeks ago. My biggest fear is that he’ll get sick and lose the hard fought ounces. He has some foods he likes, and is still on 32 ounces of 26 cal/oz formula a day. At the slightest bit of discomfort from teething or any kind of overstimulation, he just stops eating altogether. Maybe I can get the clinic neonatologist and therapists to give me some advice about combating that. It doesn’t seem to concern his pediatrician.

I am very interested to see what they have to say about his hypotonia, and whether that is affecting his walking/lack of walking. He’s got several words he uses sporadically. I think he’s going to do very well on most of the gross and fine motor stuff.

I have some anxiety over this appointment, but my worry and anxiety has been a lot more manageable since RSV isolation ended. At the November appointment, I really hated both being in a hospital and the fact that he was playing with toys other kids had touched. Yuck!

I’m just really thankful I was able to get him down for an early nap. He was half asleep last time, and very angry by the end of the clinic.

6/3 was our scary anniversary. The day he stopped breathing and went blue. I went in the ambulance in a pair of jeans, a nightgown, and a pair of flip flops. I was weirdly calm. The paramedic was freaking out because he expected a 3 month old not a 7 lb newborn sized baby. None of the oxygen masks in the ambulance were small enough. The EMT and paramedic were surprised that I wasn’t freaking out on them. D was very prone to A&B’s in the NICU. I had seen that before just not without a monitor to show me his saturation level. We are so lucky that it was GERD, that he was fine, and that that was our worst day.

 




Drake’s 3rd Birthday

February 20th, 2015

Twitter Updates

Error: Please make sure the Twitter account is public.