Thankful Thursday

{note: I did actually write this post yesterday, but never got to post it}

Yesterday wasn't the best day for us. We had Kaleb's post op since getting hearing tubes with his ENT. The fluid is now gone, however he is still at a moderate hearing loss range. I'm very sad about this. He will be getting a brainstem response test at our children's hospital along with a CT scan of his ears. He will then be getting hearing aids. This came as a shock to both of us.

Today is a new day and I need to remember what I'm thankful for.

- the beautiful weather in FL -

- my recent visit with Trisomy mommies -

- my cousin visiting after not seeing him for nearly two years -

- nights out alone with my hubby -

- our health -

- Baby K's therapists -

- our local CBS news producer and reporter sitting down with me and listening to K's story -

- Nolan and his helping skills -

- Being able to stay at home with the kids -

- The time in the morning when all of us our snuggled together in our big king size bed - 

- my mom -

- large blankets (instead of sheets) that can be easily tucked into K's crib after he has wet the bed (nightly) -

- K's new learned skills, sitting up from laying down, clapping toys together, etc -

- silly boy time between my hubby and kids -

Not a Death Sentence and a Letter

Last night I was thinking about today's blog post (lets just pretend I write on here daily okay?). I got to thinking that since this is Trisomy Awareness Month then I needed to bring awareness to doctors, specifically a doctor that scared the crap out of me when I was pregnant with Kaleb. I figured that doctors may Google their names from time to time and maybe this post would come up, and he would be better educated because of my blog post. It sounds good in theory anyway.

I've talked about this doctor before whom I met around my 21st week of pregnancy with baby K. His name is Dr. Locksmith. He is a perinatologist at Winnie Palmer and I was sent to him to have an ultrasound and for further testing to see what was going on with my baby. He's a very quiet man and doesn't have the best bedside manner, especially for a terrified woman laying on his table.

The first time I met him I had an ultrasound and he came in and told me and my husband and due to my baby's clenched fist it appeared that my baby had something called Trisomy 18. He told me that Trisomy 18 is always fatal. He recommended getting an amniocentesis to make sure and left the room to get the long ass needle. Once he left the nurse in the room with us told me that she disagreed with him and did not believe my baby had Trisomy 18 because my son's hands were not clenched a certain way and didn't have a couple other characteristics of Trisomy 18. She gave me hope.

It turned out that my baby did not have Trisomy 18, but Trisomy 9. And since then I have found out that Dr. Locksmith was terribly wrong about the life expectancy of Trisomy 18 children. So here is what I would like to say to him...

Dear Dr. Locksmith,
I respect your work as a doctor and as a person but I need to let you know how terribly wrong you are about Trisomy 18. You came into my room and told me that it looked like my baby would definitely die after birth and walked out of the room. First off, you shouldn't tell someone these things if you don't know for sure. Second off, don't just walk out of the room. Has anyone told you that you're child is going to die? Try walking in my shoes. Finally, I hope you never tell another patient that their Trisomy 18 child is going to die. Trisomy 18 is NOT a death sentence and I know many families with T18 kids that live long and happy lives. There are some much older T18 people alive as well, into their 30's, 40's. Please do not comment on something that you have CLEARLY not researched. Even if my baby turned out to have Trisomy 18 I would not have aborted. Please take time to become more knowledgeable in the area of Trisomy, I would hope you would want to do this for future patients and their children.
Sincerely,
Erin

PS: This is Kayden. He has Trisomy 18 and is 10 YEARS OLD. Look at those beautiful eyelashes, he's such a happy boy! He is just one little boy LIVING with Trisomy, there are so many others and I've come to know many of their mothers.
       
PPS: Here are some links to websites you may find to be correct and informative on Trisomy 18.
Trisomy Advocacy Group
Noah's Never Ending Rainbow
Support Organization for Trisomy (SOFT)
Rebekah's Blog, Redefining Incompatible With Life,
Lily's Blog, Journey with Trisomy 18

Strength.

During my pregnancy with Kaleb and since I've had him so many people tell me how proud they are that I am so strong and I'm just amazing. I know I've said before but you do what you have to do, anyone can do it when you are pushed. I HAVE to be strong. When your child has an illness, disorder, different abilities, or any area where they need a little push in, you put on your big girl panties and take it head on. It's all instinctual.

However, I recently met one of my dear "Facebook friends" in person, Ashley. And now I know that there is real strength out there. She has been through so much. I'm not sure if I could have the kind of strength she has. She has a Trisomy 18 daughter (Miss Mariah), is only 19 years old (actually 20 years tomorrow), and is a SINGLE MOM...living on her own. She also doesn't have the best support from family.

She is a pillar of strength to me. I am so lucky in that I have my husband, my older son to keep me wacky, and pretty good family support. I just don't know how she does it.

Recently her daughter became very sick and was transported to an Orlando area children's hospital. I met up with two more dear special needs mommies and we went and visited Ashley and Mariah. Ashley is so good with Mariah. Due to Mariah having Trisomy 18 any little sickness can be the difference between life and death, she is currently in the Pediactric ICU, but is doing much better. Mariah has a feeding tube and has a trach. Kaleb has never had either and to see her move around them in ease and know what to do, was just amazing. When the nurse came by and said she needed to start Mariah on a feed, Ashley quickly responded she would do it, knew the size of her trach, and really knew a lot more in some areas than the nurses did.

Obviously if you have a child with medical devices you are going to learn these, but I never have had to...and I thank God for that. It was just breathtaking watching her take charge and know every little thing about her daughter and her medical care, especially at the age of 19 years old. I believe she had Mariah at the age of 16 or 17 (ahhh I can't remember) and having a baby for ANY teen mom, especially a single teen mom is really difficult. But to be a single teen mom with a child with special needs, especially Trisomy 18...and SUCCEED at being a wonderful mother...that's truly amazing.

I'm so glad to call Ashley a friend and know that we live closer than most Trisomy mommies so we can continue to support each other in our journeys. It also doesn't hurt to have our other wonderful mommies Jeannette and Chontee. After spending time with Ashley and Mariah in their PICU room we went downstairs to the cafeteria and sat around a big round table. We talked for what seemed to be hours. It was wonderful. We ALL cried. People around us must have thought we were nuts, but it did help being in a hospital I guess. It's so nice to be around others who truly understand what you are going through and they don't stop talking to you because you are doing things that they aren't doing or understand.

I love being a special needs mommy and I am so glad to know the wonderful people that I do, especially Ashley and Mariah!

By the way...

Happy Trisomy Awareness Month

;)