Eden's Chair

Well, Holland's sleeping so I am finding myself with some time on my hands. I thought about taking a nap, but it is IMPOSSIBLE in this crazy place, so I decided to drink a big cup of vanilla cappuccino and do a post about Eden. I miss her. Just look at these pictures. That kid is so darn cool.



Anyway, I am sure many of you remember the post I wrote about equipment. It seems like there is a lot out there, but none of it is just right for Edie. After much pondering, and trying out a lot of different ideas, we have found a good solution for Eden to sit at the dinner table with us. You all were right when you said that the Tripp Trapp chair probably wouldn't have enough trunk support for Eden. My good friend Heather, mom to Marley, bought a similar chair and found that it wouldn't work for Marley, so loaned it to us to try out. By itself it doesn't work at all, but strap this Tumbleforms feeder seat to it, and it is perfect. It brings Eden right up to the table, with enough support for her to be able to practice self-feeding, without flopping over. It also has a place for her to put her feet, though we may have to put some straps on it to hold them in place. It also works great for her to kneel over the back to help wash dishes and play in the water, one of her very favorite things. In fact, I wonder if this solution might work for Miss Marley too???



We did try the Bumbo at the table, like several people suggested, but Eden still has to work to hold herself up in it, and it was too much when she was trying to eat at the same time.

And just while I am talking about equipment... I got a call from the Medical Equipment supplier and they say my insurance won't cover the pony walker. I called the insurance company AGAIN, and they say they don't know why not. Hmmmm. Maybe I am not asking the right questions. I was going to sort it out this week, but here I am sitting at the hospital. I wonder if they just give everyone the run around, hoping that you'll give up and buy it yourself with credit on ebay??? We've GOT TO HAVE the pony walker. Eden would be so upset to see it go. She is already very attached to it. In fact, last week (or was it the week before?) when she was sick, I brought her to bed with me, and she was talking IN HER SLEEP saying "walka, walka, walka." She has a one track mind. It really is super cute...until you're trying to do PT with her and she won't let you put her down, and she arches her back and stiffens up and wails "walka, walka, walka!!!"

Sick and Tired

Sorry to keep you all waiting, but finally here's the longer version...

Holland had a rocky Easter Sunday. We could tell that she wasn't feeling great all day. She took a long nap during the afternoon, and when she woke up she was coughing constantly, and seemed much more lethargic and out of it than usual. She barely ate anything all day, and wasn't drinking all of her normal bottles. She ended up going to bed okay, but awoke in the night coughing, and never really got to sleep again. We brought her to our bed and gave her treatments about every 2 hours. I called the doctor's office, and took her in on Monday afternoon.

At the pediatrician's office she was satting between 88-92. We did a treatment at the office, but it didn't help at all, and she stayed around 92, so the doctor sent us to the ER for another chest xray. When we got to the ER she was satting 83, and only came up to about 90 following three treatments in a row, so they decided to admit her AGAIN.


Initially, like last week, Holland refused to wear a nasal cannula, so we were trying to give her blow by O2, and occasionally she would wear a mask while watching a video. This week, Holland's sats are not staying up, even when she is awake. When we take the O2 away, she drops to between 88-92 right away. When she is sleeping, it goes even lower into the 80s. The first night John and I took shifts staying awake with her to blow the O2 on her face.

Finally yesterday evening, she was in a decent enough mood to try the cannula again, and she has been wearing it since. This makes it a lot easier for us to get a little more rest. Now I am able to sleep slightly better knowing that her O2 will stay on her face.

Yesterday, I thought today would be a better day. Unfortunately, Holland had a pretty rough day. She was VERY tired and lethargic, and only spent a few hours awake. Her face has been very flushed and sweaty. She has been as ornery as can be, and doesn't want anyone to touch her except for me, and maybe her dad. She cries when people enter the room, and tries to hit anyone who touches her. Today it seemed like she didn't even have the energy to be as mean as she wants to be. She didn't even want to play in the "hallway." We have been watching videos nonstop. In response to my fears, the doctor came in to see her again this evening, and increased her breathing treatments from every 4-6 hours, to every 2. We'll see if that makes any difference.


My intuition is telling me that something is not right. I have been solid and calm for the past few days, but the stress and lack of sleep is starting to get to me. I took a break this evening when John got home from work, and cried the whole way to my mom's house. I had a dream last night that Holland had to be put on a vent. I know logically that this probably WON'T happen, but it is a big fear looming in my overactive imagination. I don't think I can handle it if that happens. I don't even know how I possibly survived 110 days in the NICU, but now feel like I am near my breaking point. This is nothing compared to that. But still. Haven't we been through enough? Will it ever end?

I feel bad for Eden. I know she is in GREAT hands with my mom and dad, but I worry that she feels like we abandoned her. When I stopped to check in on her this evening she was happy, had eaten great all day, and was zooming around the kitchen in her walker. I don't know why I feel so bad about leaving her. I guess I miss her. And I worry that she misses me, and her sis.


The doctor today said we'll be at the hospital for at least another 48 hours. That would put us out on Friday. I seriously doubt it. The way things look right now, I can't imagine being home before next Wednesday. Who knows though. I guess today could have been her bad day, and tomorrow she'll turn the corner. Stranger things have happened. We've made it this far, haven't we?

Sorry if this post seems overly negative. It probably isn't as bad as I make it sound. Watch, they'll discharge her on Friday, and you all will think I am a neurotic mess! But hey, any of you who have spent more than a night or two in the hospital with a very sick kid know how I feel... It's not much fun. I'm stressed. Sick and tired of being sick and tired.

Deja Vu

Holland is back in the hospital. More of the same. I'll update you all later...

Cerebral Palsy Moms Group

To say that Holland and Eden like bubbles would be a HUGE understatement.

You know, I joined a "Micropreemie Blog Moms" Group a while back, and have found it to be really interesting, useful, helpful, and supportive forum. I feel like I have gotten to know some of the group members pretty well, and have found them to be quite wonderful in responding to me when I need someone to vent my frustrations to, as well as to ask questions related to having preemies.

Occasionally, someone will post a question related to having a child with a disability, such as what are the signs/symptoms of CP, what is a good pediatric stander, etc. Sometimes there are questions I feel qualified to respond to, and sometimes not.

Recently through this blog, I have "met" a few other moms of children with CP, and have gotten to like them quite well! Collectively I think we have a lot of questions, as well as a lot of answers and ideas that we can share with one another.

So, I think I would like to start a "Cerebral Palsy Moms" Group where we can keep in touch and connect with one another on another level. I think this could be a valuable resource for us to share ideas and experiences, and to learn from and help one another. It would also be a great way for newer moms of children with CP to find some support. What do you think? Jacqui? Kathryn? Heather? Angela? Anyone else? Would those of you parenting children with CP be interested in joining such a group?

I have gone through the first few steps of setting this up. I apologize that I don't really know what I am doing, but I think I can learn. If you have a child with CP, and are interested in joining, click here. Let me know if it works, or if you have problems, and I'll try to figure it out. Or I'll ask John to figure it out for me:)


This is the bubble QUEEN!

Easter 2007

We had a lot of fun coloring Easter eggs with the girls this year. Only about half of them ended up broken! Eden was especially interested in the process, and ooohed and aaahed over every egg.

Poor Holly is still having a hard time fighting this recent bug. I took her to the pediatrician on Thursday. While we were there, she didn't cough once, and her sats were at 97%, so she was declared well. We came home and that afternoon she took a five hour nap. When she woke up her fever was back, and she started coughing again. Each night since she has woken several times in the night coughing, and we are doing breathing treatments about every four hours. She had a fever all day Friday, and part of yesterday, as well as this morning. In between coughing fits she seems okay. She doesn't really seem to be wheezing as much, and she isn't as crabby. But once the coughing starts she becomes a mess. I wish she would get better. I feel really bad for her.

Yesterday we went to my Grandma's for our annual family Easter dinner. We really debated as to whether or not to go, with Holland still sick, but everyone really wanted to see the girls, so we went. We had a lot of fun, cause no matter how sick she is, Holly always perks up for a party. Eden was a blast in her walker flying through my Grandma's house. It was nice for my extended family to have a chance to see her mobile. She was so funny laughing and trying to get into everything. She also LOVED my Grandma's mac and cheese. Since she has been feeling better, for maybe the last three or four days, she has been eating REALLY well. She was diving at the dinner table yesterday, signing and saying "eat." She sat in her chair for over a half hour chowing down on ham, mac and cheese, green beans, and spaghetti salad. Then she had some banana pudding for desert. I think she may have eaten more Easter dinner than my nephew Malachi (who by the way, weighed 32 pounds at his 18-month checkup!). Unfortunately, the party was cut short by another of Holly's coughing fits, and we had to leave to give her a treatment. Poor Holland.

Finally, just for fun I thought I'd do a flashback picture from Holland and Eden's first Easter. I absolutely adore this photo. I miss my squishy little babies! They have gotten so big! And so opinionated!

Could she be any cuter?

Home and Healthy...well, almost...

We are home! It's late, and I don't have time for a long update since I haven't really slept for three straight nights, but I wanted to let everyone know that Holly is doing well. I'll have to take her in to the peed and pulmonologist this week to have her checked out, but she did a decent job of keeping her sats up during the night...well, at least during the four or five hours that she actually slept, so they let us come home.

The good news is that she went to bed tonight in her OWN bed, with relatively little fussing, and is still sleeping soundly two hours later:) There will be no strange people coming in multiple times during the night to mess with her and wake her up, and boy, do I know she is happy about that! I know I am!

Thank you all for your kind thoughts and prayers for Holland. The kindness and support we have received through this blog is inspiring to my family, and gets us through the rough patches.

PS. I haven't had much time to take pictures over the past couple of days, so I dropped in one that I recently found on my dad's camera...enjoy!

Life on Hold

Just wanted to do a quick update, and let you all know that Holland was admitted to the hospital yesterday afternoon with viral pneumonia and reactive airway. We had a miserable night trying to manage it at home on Sunday, so I took her in to the ER Monday morning. She is doing much better with her steroids, antibiotic, and breathing treatments ever three hours. We thought we'd bring her home today, because she is holding her sats up with no oxygen, and acting like her totally fine, happy, stubborn, playful self. The problem is that during her nap her oxygen fell into the high 80s so they want to keep her at least one more night. Will keep you posted!