Friday, June 26, 2009

Everything in between

Well, in addition to Kylie's diagnosis with IS and the crazy times with the ACTH, other things have happened along the way. I will do my best to keep things in chronological order, but things were pretty much a blur during a lot of that time, so bare with me here:


In addition to being on the ACTH that makes a little baby incredibly fussy and inconsolable, Kylie erupted some new teeth. Not one, two, or three teeth throughout this process, but six!! Yes, that is right, she had six new teeth come through, so we got totally whammied with the ACTH and all of these new teeth popping through left and right. Let's see, we started the ACTH on April 18th, and she had a new tooth come through on April 23rd, then another on May 10th, May 14th, May 25th, and the last of the six showed up on May 31st.

Holding her own

I don't have a date for this one, too crazy with all the teeth and everything else, but Kylie started holding her own bottle during her feedings. It was so cute to see her holding that bottle, and then tipping it back to make sure she would get a good flow...just so cute! She is getting so big, so quickly...and not just the chunky-ness of the ACTH, she is growing up. Our baby girl isn't quite the baby anymore.

Sitting Up

I know we did a post of this one, but I needed to add it to this post too. Kylie learned how to sit up without any support from mom or dad. It was just awesome to see her doing something so big! She hit another milestone, and that is just a big sign that she will beat this IS thing and overcome. Not having any developmental delays prior to the diagnosis, and the fact that she is continuing to develop so well is a total blessing...just greater celebrations for us all!

First Cold

Despite all my sanitizing and mask wearing, little Kylie caught my cold the last week in May and had an icky nose for about 2 wks. From the moment I felt a sore throat coming on I began wearing a mask, and doing even more handwashing on top of the already extra handwashing I had been doing, but my bugs some how got to her. She was soo cute when she would take her bottle during the time when she had the icky nose...she would milk the bottle (she would squeeze the nipple with her hand to make the milk come out faster so she wouldn't have to suck) because it was too hard for her to drink with a snotty nose. She is a smart cookie for sure :)

Bouncing/Jumping Baby Girl

Goodness one of Kylie's most favorite things to do is bounce and jump around in the Johnny Jumper that we hang in the doorway. We posted a video of this with a misc update, but boy it is so cute. That clip is the first time she was in it and started bouncing around, but boy she has quite the ups now. Here is a clip taken of her jumping skills from earlier today.

More Foods

Okay, so about a week before Kylie's diagnosis we had decided to take a break from solids as she was not having the best reactions to them. It was during our week off, when things unfolded. Anyhow, since the ACTH can cause blood in stool, and that is also a possible reaction of a food allergy, we were holding off on reintroducing them. After talking with Kylie's pediatrician about my concerns with it being forever (at least it seemed that way) until she would be back on solids, we asked what foods would be safe to try while still on the ACTH. So, on May 19th Kylie got to eat carrots again...woohoo! It is one of her favorites...also part of her celebration lunch and dinner on the day of her last shot of ACTH, along with some pears, and turkey rice.

Other Stuff

Well, about a week before all of this I had went to the doctor for postpartum (4/6) was just a few days before my apptmt when I learned of so many other women that had went through this. Hmmm...maybe if I knew it were so much more common than what I had initially thought, I would have gone sooner (it's just not something that many women talk about openly until you mention how crazy you have been feeling). Oh well, I was going and that was the most important thing. My doctor decided to order some labs to check my thyroid levels. Later that afternoon I got a call from my doctor, yes my doctor called me, not the nurse and she said that my thyroid was not working at all and I was exremely hypothyroidism. I was like oh, ok. She said that could explain a lot of my fatigue, depression, and so on. I had to go back the following day for additional labs, and then I was started on Synthroid (synthetic hormone replacement).

When I started to feel like I was getting sick (woke up with sore throat), I called my doctor, because I knew we really couldn't let Kylie get sick with her being on the ACTH. Since my doctor was not in I got to see another doctor, and I asked if I could just get my blood drawn to check my thyroid since I was due to come back just a couple days later. She said that was fine. Well, after her asking more questions related to my thyroid stuff, she added additional labs to be done, as she suspected I had something called Hashimoto's Disease. It turns out she was right...why not, we have nothing else unusual going on in our lives right now...ha! Just click on the link and you can learn more about that...basically it's an autoimmune deal where my body is attacking my thyroid. So I will be seeing an endocrinologist for all of first appt is July 9th. Since I have been on the meds I have definitely had more energy, and feeling more like a person. I can't wait to see what I can really feel like (what I am supposed to feel like) once we have me on the right dose of meds...I will be like super mom or something :) This deal is like nothing compared to everything else that has gone on, but coupling it with having your first child and Kylie's diagnosis of IS, it is not cool..bad timing for sure.

I also had a birthday (4/24), my first mother's day, our 3rd anniversay (6/3), and Matt's first father's day. We do pray that next year we will be able to celebrate these special days without a hitch.

Well, I think that is all that had taken place throughout our course of ACTH. Be sure to tune in again, as life is always happening :)

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