I am thankful for....

December always seems crazy for me between birthdays and Christmas and school activities, it seems there is always something that needs my attention. This year Sydney is playing in a different basketball league and games start this weekend so I'm adding that too. But I am determined to really enjoy this season. I didn't mention this month is also one that tends to bring up lots of memories of Ellie in the hospital. Although she is doing well, I can never forget what we went through 4 years ago this month. We were so close to losing her and it is really hard to just forget all that we went through....especially rushing her to Kansas City during a snowstorm. I still get a little worried when it snows....what if something were to happen again? Would we make it to a hospital in time? Sooo...my focus this month is on what I'm thankful for.

Today I am thankful for my incredible family. For my wonderful, supportive husband and 4 incredibly loving and resilient girls. God has indeed blessed me!

Hurray!

Okay, so after trying forever to remember how to log in to this site again (yes, I already know how sad this is) I have finally succeeded. I have very much missed blogging.

Life continues to be busy at our house with the 2 big girls involved in sports and the younger 2 getting into everything possible and testing us in every way:-) Ellie stayed hospital free until last month when we found out she had developed a stricture (narrowing of the esophogus at her scar site). On Nov. 2, we took her in for a procedure to widen the esophogus (they put her under anesthesia and used a "balloon" to break the stricture). The procedure was successful and we were able to take her home the same day. On Tuesday, I took her down to Children's Mercy for an Esophogram (swallow test) because she started to get things caught in her throat again. It is again showing signs of narrowing, but not nearly as bad as the last time. She has been scheduled to have the procedure again in January. We will continue on this same path until it no longer narrows which her surgeon has assured me will happen. I am so thankful for such an easy fix. More later.

Step Up for Down Syndrome

Hi Everyone,
It's that time of year again. Step Up For Down Syndrome (previously known as Buddy Walk) is Saturday, October 24th. This is the fundraiser that raises money for the Down Syndrome Guild of Greater Kansas City. We had so much fun last year...the kids had a blast!! There was food, games, pony rides, music, inflatable bounce houses and so much more. It all ended with a walk in honor of those with Down Syndrome...in my eyes, a walk in celebration of Ellie and all she has survived! You can register to walk with our team that day or you can make a donation to the Down Syndrome Guild by clicking here: https://www.syssolutions.com/kcwalk2009/Main/MyTeam.aspx?Reset=Y

If you are unable to do either, I just ask that you spread the word. Every bit that the Down Syndrome Guild receives goes toward supporting those with Down Syndrome and their families.

I hope you will be able to participate with us in whatever way you can!! Thanks!!!

Too long....

I've been away from blog too long and neglectful in my updates. It's been a busy summer with all the new things that Ellie and Maddie have been doing and with Sydney playing softball. Now we are into school and soccer season for Reagan and Sydney. Well, Ellie is doing awesome! No more hospital stays and we finally got to finish those dreadful shots at the end of July. Her poor little legs were bruised all summer long. Since coming home, she learned to pull-up to stand, cruise, stand up on her own and, as of a week and a half ago, take her first steps. It does make one wonder how much her button (feeding tube) was holding her back. She is eating and drinking well...even using a sippy cup (without the no spill piece and with our help so it doesn't spill). At last weigh-in (middle of July), she was 20 lbs, 2 oz. Finally gaining back the 2 lbs she lost before the hospital and then adding some extra (she was just over 17 lbs at her worst in April). Her vocabulary is growing everyday, both speech and sign language.

Growing right along with her is Maddie, who learned to sit up, crawl, pull to standing, say Mama, Dada, hi and nigh-nigh and now stand on her own all in one summer. I know that she will be taking her first steps soon. It's amazing how much they have picked up from each other. They are so good for each other!

Sydney lost her front tooth finally and the other front tooth is fast on it's way! Reagan is, well, Reagan! Always into something and always keeping us on our toes. Watching her practice soccer, I have high hopes on how she'll play. She's petty excited.

That's it for now, as I'm doing this one-handed (Maddie in my arms) and with Reagan talking to me. Here are some pics of the girls from this summer:

Ahh...The Sweet Smell of Home

We finally arrived home today. I have all the girls asleep so I will have to make this a quick blog...a little time for me. Basically, her surgery went well and her site is healing nicely. She decided two days after surgery to go on a drinking strike...great timing, huh? People would ask what was wrong, is she having trouble swallowing? My answer: she's two! I'm just adding as much liquid (cereal, milk-soaked graham crackers) to her diet as I can get in and hoping for her to be happy she's home and start drinking again. The reason for the delay in getting home was taking care of that stinking blood clot. Small as it is, she still has to see a Hematologist, and get those shots I told you about (2x a day for 3 months). Well, just getting it to a functional level to go home on took several days. I got a bit pushy toward the end, but it got us home. So here we are. I'll add pics soon and try to update a bit more.

All Well

Ellie is in recovery right now. We hear she did well during surgery and they were able to close everything up. We're anxious to see her and to see how she does with eating and drinking today. I'll keep you posted.

# 9

Ellie just went into surgery about 15 minutes ago. They will be closing her j-site. First they will close the intestine(jejunum) and then they will close the abdominal wall. There should be no leaking after it is closed. They say it will look like a dimple. She is able to eat and drink after and we are all hoping she goes straight to it and has no aversions. I will update more later after her surgery.