Posted (Tina) in All Posts on June-26-2012

This last month has been busy! Plus, we will be going on vacation the first two weeks of July, so we figured we’d give an update now. Between vacation, Ella’s 5th birthday and all the crazy life stuff going on, it might be August before we can update again!

We’ve made some progress in getting Ella’s communication device funded. It is still in process, but we’ve received some confirmation that it is going through the necessary steps.

Ella’s physical therapist wasn’t convinced that she could help Ella any further, so she dropped her a s patient. This was a bummer, as we had worked with her for 3.5 years. Since Ella’s gross motor skills are still not up to par with other 5 year olds, we are in the process of finding a new physical therapist.

For some reason, Josh has gotten sick a couple of times since we posted last. And same with me…normally, we are both pretty healthy. This has made for challenging times and switching on/off to take care of Ella and try our best to not get her sick.

Ella’s Grandma Eusey came out to Colorado to visit for 2 weeks at the end of May/early June. That was a fun visit!

In the middle of Grandma’s visit, Ella caught a viral infection (probably one she caught from Josh). At first, we were not sure what was going on. Her stomach was hard as a rock and very distended. Then, she started to get a mild fever. After giving her a break from food and only giving Pedialyte and water for two days, we called the Gi department at Children’s Hospital, to get directive. They were not convinced that it was not something more major, like a bowel obstruction. We weren’t that concerned because the symptoms were not the same as the last time she had a bowel obstruction, so we were quite surprised when the ER doc came in to show us the xray films and mentioned that they needed to admit Ella to the hospital. After 1.5 hours and 4 attempts for an IV, Ella was traumatized. Since Grandma was visiting, Josh took the lead and spent day and night with Ella at the hospital from Friday through Tuesday. It was a long and grueling stay, as we were put under the general service team (instead of the GI service, for example). We felt like we had no advocates and had to fight to get information and advocate really hard to overcome unnecessary tests and procedures that they wanted to push. In any case, a healthy kid w/o Ella’s medical conditions would have been able to stay home and use over-the-counter medicines, but because of Ella’s system, it required hospitalization and complete bowel rest via IV fluids. We were just thankful that it was viral and that she did not need a major surgery!

Ella’s overall health has returned to normal since the hospital stay, but she did lose some weight from that episode and we are still trying to get her GI system back on track. We’ve had lots of fun with blowouts lately – let’s put it that way! She has an appointment in mid-July to meet with her GI doctor again to follow-up with the recent hospitalizations and changes.

We went to her pediatrician as a follow-up to the hospital visit and are planning to return in September to give Ella more vaccinations and a flu shot.

We had a fluke storm here in the Denver area in early June. Hail storm that was huge, tornado sirens, destroyed flowers and plants at our house. It lasted for about 3 hours while we hung out in the basement. It’s been so hot and dry – just this week we’ve had temperatures 100 degrees or higher four days in a row – that is a first for Colorado. And with all the heat and dry weather, Colorado has had so many wild fires in the mountains. While the fires are not really near us, please pray for all the families affected.

Our nanny got married on June 2nd and we missed the wedding since Ella was at the hospital. Such a bummer! Now, she has decided to move with her husband back to Kansas. This means that we will only have her until the end of July. The hunt has started for a new nanny. Such a hard thing to find.

One of our rental properties is up for renewal – we think we’ve found a new tenant (should have it confirmed by the end of the week), but that lease ends at the end of July too, so lots to coordinate that week!

In addition, we are having a family reunion for the Snyder family (my Dad’s side of the family) the first weekend of August, just a couple of days after we get a new nanny and turn the rental property. Crazy busy week!

Ella has figured out that sunglasses are cool – when we go out and she wears them, I think she likes them because she does not take them off. And everyone comments that she looks like a Hollywood rock star!

As recent as today, she left her occupational therapist speechless! With coaxing and assistance, Ella ate 1 1/2 tsp of beef gravy from a spoon, 1/2 tsp of cheese soup diluted with water and salt added, and 1 1/2 tsp cream of chicken soup diluted with water. All with a spoon and touching her chin (while we sang her favorite song to her as positive reinforcement). Wow!!!

Enjoy the summer until we post again!

Elizabeth Norman on June 26th, 2012 at 9:02 pm #

She is so adorable! I hope you have a wonderful vacation and that you find a responsible, loving nanny soon. I was so happy to see your mom after such a long time.

Julie kirk on June 26th, 2012 at 9:46 pm #

Thanks for taking the time to share Ella with us. he is so darn cute!!!!

Pat Hadden on June 26th, 2012 at 10:33 pm #

Wonderful news about Ella trying food; what an advance. Fingers crossed for more good news soon. Enjoy your vacation…it sounds like you’ll really need it after so much happening. Much love.

Adrienne on June 27th, 2012 at 2:43 am #

such a BIG GIRL! she looks so sweet with her hair in braids! love it! so pleased she is making progress! : ) happy days!

John & Estela on June 27th, 2012 at 7:57 am #

Loving all the photos and updates. Enjoy your trip Tina, Josh and baby girl Ella. May God bless your entire family – provide traveling mercies. Love and will miss you —

Steve and Joan on June 27th, 2012 at 8:07 am #

She is so beautiful and special. I love to see her growth in all ways. Enjoy your vacation and prayers with you each day. Hugs and love, Steve and Joan

Jennifer Harris on June 27th, 2012 at 8:52 am #

Ella is as beautiful as ever! Enjoy your vacation time and thank you for sharing…

[email protected] on June 27th, 2012 at 8:54 am #

Doodlebug you are so big!! I can’t wait to catch up with you and mommy and daddy soon. I have moved back to Denver so I want to see you soon!! Lots of hugs and kisses!!

Laura Marold on June 28th, 2012 at 2:58 pm #

Thanks so much for the update. I love to hear how Ella is doing. The news about the food is fantastic. I hope the two of you have a great vacation. You really deserve the time off. You are both such great parents. Love, Laura M.

Jennifer Tenney on July 2nd, 2012 at 5:44 am #

Yay! Awesome progress on the food front! I have to say that Ella always looks so adorable! I lover her clothes and the way you do her hair!!!!!!!!! It helps that she has such a cute smile to go along with it!
Hugs and prayers for continued good health and progress!
Mom to Dakota 12-25-2008
RCDH survivor

Linda on July 3rd, 2012 at 3:24 pm #

Thanks for posting. I was really concerned for Ella with all the smoke from the fires. She is so cute. I hope you enjoy your vacation and continued good health.

Kellie on July 26th, 2012 at 1:42 pm #

WOW! It’s been a while since I stopped by and I am so impressed with the progress Ella has made. She is beautiful and looks so healthy. Way to go!!!
-Kellie, mom to Carter

Cathryn on August 19th, 2012 at 6:55 pm #

So happy to see Ella is doing so well! I just got back from a mission trip and am happy to see she is awesome! Praying for her!

Debbi Kennedy on September 9th, 2012 at 11:35 am #

Love love love seeing your posts and watching Miss Ella grow. I’m so excited that your family is growing and I love seeing all the happiness I see in all of you!

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