Posts Tagged ‘EI

16
Dec
14

Treading Water, but Ok.

We’re all ok.

We went on vacation to Florida in October. I didn’t post about it. Drake had a horrendous bout of croup while we were in Florida. I almost took him to the emergency room, but his pediatrician on long distance listened to him over the phone and advised hot steam in a bathroom instead. Not breathing well is never a state you want for your kid. He was well the first night and we went to Mickey’s Not-so-Scary Halloween Party. That was a blast. The rest of the week. Not so much.

He has been on antibiotics every 3 to 5 weeks since April. Within 2-3 days of the start of the sniffles, it goes straight to both his ears. Our follow up from the last Sunday urgent care visit is tomorrow. I’m going to push for him to visit his ENT. His mouth cyst could use a check anyway.

We are nearing the end of our EI, First Steps journey. Our final IFSP meeting was last week. The week prior he had his evaluation with his future elementary school if he qualifies for preschool at 3. His PT is pretty sure he will. She, and our coordinator are going to come to the January meeting about his assessment results.

I am torn, and so is daddy. Obviously, we want him to have the services he needs, but we really like his private preschool. Flip side, we could really use the economic break of a half day of free school. Ugh choices. And if we don’t start him on IEP’s now, if he needs help later what will the battle be like to get it?

He’s just not there yet gross motor wise. We’re operating in the 20-24 month range, which is great for where he started from, but I KNOW he needs the PT services to continue. I joined a Hypotonia parent group on Facebook.

We are worried he may have had a seizure after spending the night with his Gammy. She said he spaced out for a long time and touching him and speaking to him she couldn’t get him to answer. When he came out of it, he just said Hi Gammy like nothing was wrong and she took him to school. Pediatrician is having us keep a journal and taking a wait and see approach. He’s never done anything similar to me.

I have been asked to teach an associate’s level class next semester now that I have completed enough graduate hours. I am really excited and I hope it is a good experience for myself and my students. It will be a small business finance class.

And then…Christmas. And then…3. What the heck? Where did my tiny baby go?

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17
Aug
14

Back to School, Work, Life

In two weeks, I will officially go back to full-time hours at work. By January, I will have completed enough Master’s level courses to try teaching my first class, so this fall I am receiving mentoring on instructional design and classroom management. In the midst of all of that excitement, Drake will be going to school full-time for the first time. Since February, he’s been going part-time 2 days a week while I go to the office. He’s been doing really well, so we feel he’s ready for more.

I am super from being a domestic goddess, and for someone who is home a majority of the week my household chores could probably have been done a little better. However, I have lots of memories of morning walks, coloring and finger painting, dancing to Choo-Choo train songs, turning a kiddie couch into a car, table forts, and couch snuggles for story time. We had random trips to the zoo just to ride the train, therapy visits from EI, and going to the park after nap time.

I know I will always treasure this 2.5 years at home. At first, it was to protect his preemie immune system. Then, it was to make sure we made the most of his Early Intervention and other therapies. Now it’s time for him to learn how to enjoy the company of other kids and following a classroom routine, and it’s time for mommy to resume working. My little guy isn’t a fan of following plans that aren’t his own.

When we were first in the NICU and for the first year home, prematurity, its effects, and my guilt were all-consuming. These days, I follow more clubfoot treatment groups on Facebook than preemie ones. As he grows, I worry whether I am using his “night-night” shoes optimally to give him the best chance of full correction. We’ve had several nights of “ouch hurts” and “nite shoes off” screaming lately in the wee hours which always make me nervous, but usually ends up coinciding with a growth spurt.

I will never, ever forget my fear when he stopped breathing after choking due to GERD two months after coming home. The fear in the paramedic’s eyes on the ambulance ride to Children’s when he realized he didn’t have a mask small enough. Those memories are being supplanted by the sight of an excited two year old boy on a ferry ride or the thrill he has when he spots a train on a bridge.

We aren’t done dealing with the effects of prematurity. We’ve just been very lucky. He will probably always wear AFO’s for low muscle tone and weak ankles. We’re still pushing to get an MRI because he’s still showing some weakness on the left side versus the right that concerns his PT. But all in all, life is pretty sweet these days and thankfulness has finally overtaken fear.

11
Apr
14

New Things for Spring

I have had a rough week. Drake being so sick from his cold/ear weighs heavily on me, and I had a bout with anxiety on Monday when I took him for his new AFO measurements. The orthotist was in the same building as my OB and Maternal Fetal group. That was a big wake up call for me. 

I have not been as good about praying, writing in my journal, or going to the gym as I had been over the winter. I actually did write a post about the panic attack, but I switched it to private. I need to make sure I take care of me and my mental health. I think I feel guilty for my feelings now where I used to just feel guilty that he came early. He is doing amazing. I feel like I don’t have the right to be crazy about the past anymore. I do know that is silly. We feel how we feel. All you can do is figure out how to wade through it and not get bogged down.

I hope that I can get everything back to a firm middle ground because I received news I had been waiting for. I have been accepted into an masters program, and now I have been given the green light to start my orientation period next week. This is a 14 year old goal of mine, and I really think Drake has given me the courage to pursue it. I do worry whether I can keep my little universe running smoothly, but I know my family is on my side and we can move mountains!

My six month goals are:

1. Teach Drake to raise up on his toes and the awesome gross motor things that follow.

2. Go to the gym on my regular schedule and check in with my trainer once a week. The long term goal is to get off some medicine I’m on, and just be healthy.

3. Enjoy my studies. This program will involve a lot of analysis and a lot of writing. I’m nervous about re-entering the academic world after a 14 year hiatus, but I remember how much I used to love it.

4. Go to Disney World. We have our first real family vacation planned for October. I am so excited, and we are carefully planning all our Orlando/Space Coast fun. 2 days at various Disney things, a trip to Kennedy Space Center, and a day at the beach! 

I was in AFJROTC in high school, and we made many, many trips to the Houston Space Center. It has always fascinated me, and I can’t wait to see the other NASA facility and share it with Drake and the hubby. Keith and I first visited Orlando in 2009. We made the drive to and watch a shuttle launch offsite We even got certificates that have our names and the date as witnessing a shuttle launch. 

01
Oct
13

Battling for Medical Procedures

I really respect our PT from Early Intervention. Drake has made huge strides and we have lots to work on, but he soaks it up like a sponge. 

Yesterday, he was tired so he kept bringing her books to read and climbing into her lap. We still made a little headway on stairs. 

We have been having a lot of trouble with him favoring his right hand for doing fine motor activities over his left hand. Apparently toddlers usually don’t choose this early. I just assumed prior to EI that it was normal preference for a stronger side. 

His physical therapist strongly suggests we try to get approval for an MRI pushed through to check things out. D only had one head ultrasound in the NICU, and she’s concerned that if anything happened to cause the generalized weakness on his left side it was missed. 

Apparently trying to get approval for an MRI for a 19/16.5 month adjusted kid is a big deal because they have to put them under general anesthesia for it. So it’s advocating time again. I’m going to try his pediatrician first, and then I’ll move to the NICU follow-up clinic Neonatologist if I don’t get anywhere with him.

To be perfectly honest, I hate the idea of him going under again, too. It took us weeks to get him back to eating properly after his hernia surgery when it sounds like most kids aren’t phased by it at all. 

I guess I’m wondering if other preemie families have had later diagnostics MRI’s done? Were you glad you did? Did it make a difference in the treatment/therapy avenues you pursued? This is my new “research paper” stuff I’m obsessing over. 

In other news, we are not on isolation this winter. It scares me, and we plan to be cautious but he’s had no respiratory issues and his medical team thinks it’s time. 

15
Jul
13

Getting Started with EI: Routines

Our second in-home Early Intervention visit was this past Friday. They sent a prep sheet about our daily and weekly family routines.

I was curious about this meeting. Our family routines are the heartbeat of our daily/weekly/monthly life.

I wasn’t expecting how I’d feel at the end of our hour long interview. Drained.

Being asked to rate how your child’s medical conditions/behavior/gross motor & fine motor skills affect your daily life really starts to bring out the little issues. The ones you ignore day to day because you’re the mom and you would go to hell and back for that mini human.

The questions about my me time and when I get stuff done also caught me off-guard.

The one that kept me up Friday night was “What are your concerns for your child that worry you the most? What keeps you up at night?” Are you really sure you want to open that bag of worms, lady? I’m awesome at worrying something to bits. 🙂

I’m very happy with 9 preliminary “goals” that came out of the meeting. I think it will do a TON for D’s quality of life to start working on these things.

I learned how hard it really is to think that your care/teaching isn’t enough for your child. You would think that lesson would have been made abundantly clear to me in NICU days. I am by no means a “kid” expert. I didn’t babysit. My youngest sister is only 4.5 years younger. My only kid experience was being one. I really appreciated our coordinator taking the time to point out that I was doing great with him and his needing additional therapy was no reflection on my teaching/guiding abilities as a parent.

I’m still a little sad that this is all necessary for him, but I am hopeful that I will enjoy this team and our work together for D’s well being as much as I enjoy working with his NICU follow up and medical team.

Initial recommendation is PT twice a month and Speech/Feeding once a week for the next six months, and then a follow up evaluation to see how things are progressing. We also received a list of where he’s at with various development and some goals and exercises to work on ourselves.

Our next meeting is scheduled for the end of this week and it will be the “goal setting” meeting.

 

 

 




Drake’s 3rd Birthday

February 20th, 2015

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