Family

Therapy, School, Feelings

We had our annual ARD for Joseph and John to discuss their school and therapy needs. Joseph’s therapy needs We will be continuing speech therapy at school one time a week. We will continue working on the letters S/SH, J, & K. I feel there is another letter, but honestly, I am drawing a blank … Read moreTherapy, School, Feelings

Another Diagnosis & potential surgery

A lot has been going on with the new year and getting appointments set up, doctors seen and making sure all supplies for John have been properly ordered. So I have spent a lot of time on the phone. Some days I feel like I am slowly losing it but I know I have to … Read moreAnother Diagnosis & potential surgery

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 moreDoctors and more

Joseph

I know I usually post about what is going on in our life or updating about John. However, this time I am going to be taking a little change of a pace. Joseph is my firstborn. He came into the world on August 6th, 2010. I was working at Sears Portrait Studio as a seasonal photographer. It … Read moreJoseph

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 moreCatel-Manzke Syndrome: Our Journey

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 moreKids with Catel-Manzke Syndrome

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 moreHurricane Harvey

School Year has begun

We’ve started school as of Monday! It has been busy with getting all the items the school needs for each kid. All the forms that every school needs is coming home and I have been busy filling them out. Also there are some more forms John needs to start with speech at school, and having … Read moreSchool Year has begun

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

May 20th – Esperamos

We didn’t see any weight gain this morning. That’s the most frustrating part. His doctors have increased his overall intake to see if this helps. In order for him to go home they’re looking for two consistent days of weight gain, back-to-back. Each time there is a setback the clock resets. Overall he’s actually in … Read moreMay 20th – Esperamos