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.