Doctors and more

We had some appointments over the past few days with different doctors. Here is a summary of our visits. Over the past few years, I have connected with other parents whose children have Catel-Manzke syndrome. Some of the questions were based on issues with their children. There is a soon to be 24yr old, 14yr … Read more

Catel-Manzke Syndrome: Our Journey

The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child … Read more

Kids with Catel-Manzke Syndrome

On Thursday, Sept 21st, John & Lillian were finally able to meet. Last year Lillian’s mom, Rebecca, reached out to me after her daughter was diagnosed with Catel-Manzke syndrome. It was an awesome feeling to finally be able to share with someone some of the concerns with John. Lillian is about 5 while John is … Read more

Hurricane Harvey

Some of you may know, I have recently started helping admin a group that is globally known. It is Mom of Trach Babies. This is a support group for parents of trached children. I have been apart of this group for quite some time. However, recently I became apart of the admin team. Since I … Read more

Developmental Levels & Traveling

This is a very over due post. I have just had a very crazy past month with doctor appointments and traveling for a funeral. First up is John’s results from ECI on where he is developmentally. Adaptive average is 16 months with a 40% delay. That breaks down to self care he is at a … Read more

Special Need Mothers do nothing?

Quick update on surgeries. Everyone did fine. Alexander & Joseph did wonderful with their ear tubes. John did well and Dr. Powitzky did above and beyond helping get John into the Operating Room. Now onto another subject that I need to address. So apparently it has been brought to my attention that Special Need Mothers “never … Read more

Checkups & Pulmonologist

Let’s talk about Joseph’s 4 yr well check up: He’s 31 1/2 lbs (13% Percentile) & 3′ 3.5″ tall (31% Percentile) The doctor thinks it wouldn’t hurt to have a speech therapist evaluate him when he starts pre-school this year. She also recommends having his tonsils removed. He snores and they’re rather larger. His pre-op appointment is … Read more

Stress, Doctors, and Therapy, sigh…

I’ve been using this blog as a way to really update friends and family members on everything that has been going on with John. Since we all know he has a lot of medical issues that are being addressed. I have also started using this as a reminder of what has happened and a way to release some of the stress of being a mom to a special needs child.

Don’t get me wrong. I love John very much, but there are times that I just need to walk away for a few moments and have some “me time” to wind down. I feel like I was constantly on the go and just a caregiver not his mother before having my mother as his home health nurse. With her, now I am starting to feel more like his mom vs. just a caregiver.

It’s hard to see your child go through so many appointments, see so many different doctors, connected to so many cords, etc… Most days I feel like I am a first time mom all over again because I have no idea what “John’s normal” is. So when he starts vomiting a feed I have to mentally run through a check list of what I have to do and why he would of vomited. Same with when any of his alarms go off. I have to check to see why and what alarm is going off.

It can be physically and emotionally draining with having an appointment almost every week (or several in 1 week). As well as dealing with all of his needs day in and day out. So there may be days that if you see me that I will look exhausted and probably haven’t slept much.

Thankfully I have a very supportive husband who helps as much as he can when he is able too. He helps numerous ways around the house and with our boys. He is my rock and listens when I need to discuss anything.

UPDATE FOR JULY 31ST:

ECI (Early Childhood Intervention) came out today to assess John. He will be needing Occupational Therapy 1-2 times a month, Physical Therapy since his physical structure is the age of a 2 month old, a Nutritionist, and Speech Therapy.

-Jacqueline

Praise the Lord!

Praise the Lord!

John’s sleep study has finally been scheduled! We have also managed to get it scheduled a lot sooner than Texas Children’s was giving us originally. When I called on Monday to see if they had started scheduling I was told I had two options.

1) I could go to the main campus and wait till October/November (like we had originally been told).

OR

2) I could go to the west campus and have it scheduled for August/September.

We went for the west campus. On August 26th at 6pm we have to report to Texas Children’s West Campus in Houston. I am extremely excited that we have managed to get this scheduled. It feels like a huge weight of uncertainty has been lifted off my shoulders.

Nurse & Patient
Nurse & Patient

My mom has officially moved down as of Sunday to take the position at Angels of Care to take care of John. It is nice having her down so she can help with him. Another plus is she gets to spend some time with her other grandsons.

Now the search is on to find a bigger place since we needed one before she moved here. So please pray that we may find one in our price range as well as a sub-leaser for our place at the same time.

-Jacqueline