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.

Shots? Seriously?

Yes, sounds like I will begin my training tomorrow on how to give Ellie shots. I don't know all the specifics yet, just that I will be giving Ellie shots of Heparin after we go home. She is currently on Heparin to thin her blood and keep it from clotting (she has a small clot where the pic line got occluded and thinning her blood keeps the clot from getting bigger). She will also begin seeing a Hematologist about the clot...just what we needed....one more doctor. I was also told that she can never have a pic line on that left side again because of the clot.

The wound care nurse came today and we took off the bag and looked at her site. It looked great compared to before. I think we are definitely looking at Wednesday to close her site. If all goes well and she takes right back to eating and drinking, we should go home Thursday. That's the plan anyway, but not all plans go as they should. Keep your fingers crossed.

Today Ellie was happy and playful in her crib. She even pulled herself up to kneeling despite the big splint on her leg that holds her IV in place. It's so nice to see her happy and loving again. She has not been herself for almost 2 weeks. It has also been nice visiting with the nurses and care assistants that she had a year ago. A few still remember her well...especially the one with her tonight. That's all for now.

Happy Easter!

Wishing you all a Happy Easter! The girls were excited that the bunny did not forget about them and knew that they were visiting Ellie. The Ronald McDonald house provided an incredible brunch and Dave's sister invited the girls over for an egg hunt. So it was still a happy Easter. The only down side was having to say goodbye to Dave and the girls at the end of the day. It breaks my heart to see Reagan cry. When Maddie and I got back up to the room, Ellie was sitting up and playing with her new Easter bunnies and throwing her glasses off like usual. No new news today except that her arm looks much better and the new pic line is working well....incidently, we had a different nurse last night.

2 Henson

If you've been to Children's Mercy Hospital then you know that means Ellie has been admitted and is staying on 2 Henson. The last day of March, Elllie had her button taken out (NO Tubes!). It should have been great news, but we spent the following 9 days with her site leaking, irritating her sensitive skin, trying to stay hydrated, fighting occassional vomiting and trying to control pain. The last straw was Thursday morning. She spent the entire night awake and after only 2 ounces of milkshake, she threw up and it had a green tint with brown flecks. Green usually means bile and brown is dried blood. Her surgeon's office sent us to the ER at Children's. After 10 hours, 5 tries for an IV line, 2 different doctors, lots of explanations, lots of frustration,1 x-ray and 1 bag of fluid; Ellie was finally admitted. In a nutshell, she was severely dehydrated from the loss of fluid (no matter how much I gave her, we couldn't keep up) and extremely constipated (colon was full--pain med was constipating and not getting enough fluids to move it out). She has had lots of fluids to hydrate her now and is getting enemas to help her bowels. A wound nurse came in to find a new way to protect her skin from leakage and help it heal until the hole can be closed. There is a bag attached to it to collect fluid (there's still quite a bit coming from it). A pic line (catheter that administers fluids into the artery) was placed yesterday so she could receive nutritional fluids. Unfortunately, I walked in this morning to the arm that had the pic line being purple and swollen. NOONE had noticed and it was very obvious. Yes, I was livid! I got her nurse in and a charge nurse who said they'd never seen anything like it. A surgeon on rounds took a look and sent her for an ultrasound to see if it was a blood clot. The ultrasound showed that her catheter was the same size as her vein and was blocking the passage of a lot of her blood. Apparantly kids with Down Syndrome can have different sized veins than typically seen. They also said it could have been scar tissue from previous pic lines blocking it. There was a little clotting but they felt sure it wasn't cause for alarm. The pic was pulled and a new line (smallest catheter they have) placed in her other arm. As soon as they pulled the pic, her color started returning. It is still swollen but that it supposed to go down. Other than that, she is happy and playing now. They hope to close the hole middle of this coming week.

Trial Run

What a long week spring break was. We planned on getting some things done around the house, but it didn't work out that way. Ellie caught Reagan's stomach bug, which then turned into a bad cold and finally into her first ear infection. This was the first ear infection any of my girls have encountered. It was not a moment to celebrate. After spending the entire night awake with her and at the doctors' offices the next day, I got sick and then my cold turned into a sinus infection. Oh well. All the kids are better now and I'm finally on antibiotics....yeah!

In the meantime, the kids have been busy. As promised, here is the update on the big girls: Sydney's basketball season ended last month and we've already started soccer season again. She played her third game last weekend and is finally making some good contact with the ball. She's in the soccer league this season (Sunflower), on an all girls team and we really like the coach. Her highlight of the last two years finally came this past weekend when she realized she had a loose tooth. She has been asking me for the last two years when it was going to happen and it finally has. She can't wait to loose it.

Reagan is really enjoying pre-school and even learning to write a few letters. Her teachers say she has some of the best fine motor skills in the class and that she loves crafts and is a perfectionist. Last weekend, Reagan was going outside to play with her daddy and she came into the living room in a dress and jewelry. I asked why she was so dressed up and she told me, "Because I want to look fabulous. Fabulous means pretty!". Too cute. I think we've read "Fancy Nancy" one too many times!

Maddie is growing like a weed. She weighed in this week at her 4 month checkup at 14 lbs 10 ozs. A week ago she rolled from her tummy to her back and this week she surprised me with rolling from her back to her tummy. She loves her sissys!

As for Ellie, we are on a trial run...hence the title of my post. On Tuesday we were given the okay to do a week long trial run of NO TUBE!!! Yep, that's what I said. So far, I think she's doing great. Yesterday she drank 17 oz of milk and today it was 19 oz...of course she was eating too. The drinking strike is over I think. I'm tracking how much and what she eats and drinks everyday and sending it to her nutritionist on Monday. She is going to calculate the calories and then I will take it all to her surgeon on Tuesday and talk to him about a plan for when we can take the tube out. Of course all of this is dependent on how she eats and drinks and if she can gain weight. On Tuesday she weighed in at 19 lbs 8 oz. A 7 oz gain from the previous week when she was so sick (we supplemented with formula feeds to get her weight up faster). I'm just hoping for some progressive weight gains. We've been in the 19/20 lb range for months now. So, I'm hoping for a good week and good news next week. Oh, and she has a new word, "eyes". We've been working on body parts. The only problem is that she wants to use Maddie has her part finder. Until next time....

The Sickies...

How I hate when the kids are sick. Reagan started it last week while I was updating the blog. Fever, throwing up, coughing...fun stuff. Then just as I send her back to school on Wednesday, Ellie gets it and right as Dave was leaving town for 3 days. Now we are down to Ellie and Maddie coughing and having runny noses. I was sooo happy when Dave got back last night. I'll update more later when I'm not holding a baby.

Ever changing...

I just write about all her changes last night and then she goes and adds more to the list. Today she said "ba-by" and she looked at Maddie and when I asked her where her nose was, she pointed to mine and then found hers. Then tonight after Dave left, I put her in her crib to play for a few minutes and Reagan comes in telling me Ellie is standing. I said, "no she's not, she's probably just kneeling" but went with her to look...and sure enough, she had pulled herself to standing, then started to cry because she was stuck. I'm so proud of her!! Sydney and Reagan get just as excited about her new accomplishments. It's such fun.

I didn't get to share about how Ellie's eating is going last night....Reagan got sick for the 2nd time yesterday. Must have been a 24 hr. bug, cause she seems to be doing fine today. As for Ellie, she eats 5 meals a day and drinks 14-16 oz of milk. Yes, drinks. We finally found a cup that works and that she likes about a month ago. Her teacher brought little 1 oz plastic medicine cups and she seems to like those best. We worked with a swallow specialist from Early Intervention for a few weeks and now she is swallowing faster (it is definitely not as delayed as it was). She only needs 4 oz of water by feeding pump now. We are getting so much closer. Of course, it is always 2 steps forward, 1 step back...she's is on a bit of a drinking strike since her minor surgery. She's decided she doesn't like the cup so well now, but I'm doing my best to pack on the calories with her food and keep her from getting dehydrated. This week she weighed in at 19 lbs, 12 oz. Only a couple oz gain from 2 weeks ago...so pretty much maintaining. The nutrionist will weigh her again next week and I'm diligently keeping track of what she eats/drinks/calories.

As for Maddie, she is quite the chunk. At her 2 mo. appt. she weighed 11 lbs, 13 oz...over half the weight of Ellie. She is 3 1/2 mo now, I can't imagine what she weighs now. She smiled at 6 weeks but didn't get really good at it until last month. She was a bit colicy: my reason for the hiatus from posting. She definitely is one that likes to be held: mom, dad, Sydney, whoever will take her and rock her to sleep. But she's still a keeper. It's definitely crazier around her than it used to be. At times, I imagine it's like having twins. At night, I rock the two little ones to sleep after putting the older girls to bed. Ellie has to be on the tube at night still, so no tough love yet in the going to be catagory.

Well, that's enough for now. I'll update on the big girls next time.

Ch-Ch-Ch-Changes....

Not just the blog site, but lots going on with Ellie. She has changed so much in the 3 1/2 months since Maddie was born. She is quite the crawler now; something she had barely started right before Maddie was born and then just took off on. While I was in the hospital, she pulled up to standing using Dave's hands. Just a couple weeks ago, she pulled to standing on her own. Slowly, but surely, it is coming along. She gets on her knees to reach things and has also gotten pretty good with the one knee, one foot stance (a beginning stance for standing). She has shoe inserts to help her stance. She tends to use the inner part of her foot to stand rather than standing flat -footed. These should help. She also locks her knees and we're working on that. She also using some new fine motor skills like stacking a block and putting small things inside of different sized containers. She's finally using some sign language (fish, bye, hi, play, drink, milk, all done and eat) and has really shown an interest in copying words and sounds lately. Just this week she said "bee" (she likes when I beep her nose), "buh" (book) and sings the "e-i, e-i, o" in Old McDonald and I yih yih yih (whatever that song is called). Other things she has said in the last couple months, fish, hi, night-night, bye, no, nose, and my favorite, "no mama". Of course they are not so clear that anyone can understand, but they are definitely words she is using.

She absolutely loves Maddie. She was jealous the first couple weeks and promptly showed us her first tantrum when we brought Maddie home but now all is fine. She now loves to kiss her and pet her head. If you lay Maddie on the floor where she can get to her, she crawls right up and just stares into her face. The only time Ellie tends to get jealous of her now is if she is hurting and I can't hold her alone and comfort her. And yes, she's giving kisses, complete with a smacking sound and hugs now. We all love that, especially Sydney and Reagan.

.....I'll update more later, Reagan's sick.

# 8

No, this is not the number of kids Dave and I have decided to have:-) It is the number of times Ellie has gone to the operating room now. It's been a busy few months for Ellie, all of which I'll update on later, but medically we've had a few issues to deal with. Last month, we made a trip down to Children's Mercy because her button site (located in her intestine and where we hook up her tube) looked really red and angry and she was running a little fever (100). Ellie rarely runs a fever so I thought maybe the site was infected. Our ped. let us put her on antibiotics and away we went to KC. The nurse practicioners (NPs) looked at it and so did the wound care nurses. They decided to change out her button and put in a new one and we were taught a new way to care for her site until the leaking stopped. This all went great and the leaking went down some and then a couple weeks later it all started again. So 3 weeks ago, I called and talked to the NPs again and sent them this photo:

Ouch!!! Right? Yeah, they called back immediately and told us to come back in. They gave us a new way to take care of her site but still didn't know why it was leaking so much. On the way home, Dave suggested maybe it was because she was eating and drinking so much now (16 oz plus whatever she eats!). Made sense to me. Then last week, one of her stitches that has been working it's way out for the last year, finally got infected (the pimple by her belly button in the picture). Back to KC we went. We saw her surgeon this time and he tried to take the stitch out but couldn't get to it. He said he'd rather put her to sleep than torture her to get to it. We asked him about the leaking too and he agreed with Dave. He had only two suggestions: Take the button out and use an NG tube (nose to stomach) for the 4 oz of water she gets daily or deal with it until we reach our no tube goal (20 oz of fluid and gaining weight). I went with the deal with it option. A year of passing tubes through Ellie's nose was enough for me.

So we made an appt. for Ellie to get her stitches out this past Monday. We had to go through all the same operating room procedures including kissing her goodbye as the nurses took her away. This part never gets easy. Even though it was the simplest operation she's undergone yet, it's still an operation. There's always a risk (we found out the hard way last year). But 25 minutes later, it was all done. He took out the infected stitch, along with another that was working it's way out. He said there was one more he could feel but it was in the muscle and he didn't want to accidentally cause a hernia. So, I looked at Dave on the way home Monday and said, "So does this count as # 8?". His reply," Yep." If only they all could have been this easy. More updates later, but I'll leave you with this: