Tuesday, March 31, 2009

Thoughts on Death

I know this is a serious title. A serious topic. So those who don't want to think about these things should not read on.

We received news today that another child with 1P36 has died. This is the fifth child that has died this past year. And our group is not that large- couple of hundred people I think. When Zoe was diagnosed, we were told that the syndrome should not affect her life span. And yet this is the fifth sudden death and it gets us thinking.

I can not imagine what Emma's family is going through right now. We met Emma and her mother, Kate at the last conference. Kate has been very involved with starting up a non-profit 1P36 fund raising group as well as completing the mission statements. When I met Emma and Kate this past summer I could tell that Kate was so proud of her daughter. Like Zoe, Emma was very easy going and loved to smile. As I said, I can not even begin to imagine the pain of losing your child. I know what it is like to live with the fear of losing a child, but not what it is to lose them.

Zoe has her echo, EKG, and halter monitor tests tomorrow. In my gut I think her heart is doing ok. We are feeling a bit anxious about it since her pediatrician has been concerned about her turning purple when sick. Perhaps this is just a normal thing for 1p36 kids. There have been many posts lately about kids with LVNC who are not doing well. And posts about kids who are doing ok. We take all of this info in and try not to get worked up until we get the test results. Easier said than done!

With death on my mind, I pack my suitcase for a trip I do not want to go on. I need to go to Michigan for the next few days for a work conference. This means that I will not be able to be there for all of Zoe's tests tomorrow. And if the doctor is not able to see Zoe until Friday, I may not even be there to hear any results.

For people who know us, you will know that we are not religious people. I don't have faith in a fair and just God. But this does not make me bitter. Zoe is a joy in my life. And to me she is perfect. Her chromosomes are arranged differently than you or I, but that does not make her any less perfect to me. At times like this I do appreciate people keeping us in their thoughts and posting supportive comments. And for those of you that pray- go ahead and pray for us because I don't think it does any harm.

And keep Emma's family in your thoughts tonight.

I was supporting a patient at work today that needed to have a tube change. She is a very articulate 12 year old who does amazing for all that she has been through but still gets very scared with procedures. As I saw her dad holding her hand, brushing her tears aside, and talking gently to her I was struck with the thought, "No parent should ever have to go through this with their child."

And now I am struck with the thought that no parent should ever have to lose their child.

With Emma on my mind, I get ready for bed.

Friday, March 20, 2009

Ok, I have to post at least a few pics....

Zoe playing in the stander. As long as we keep her playing, she will tolerate being in the stander for 20-30 minutes now. That is way more than we expected. We thought Zoe would hate the stander, but apparently she likes the new perspective it gives her on her world.

Here is a picture of Zoe walking toward me. She is really getting the hang of propelling herself forward. She is working on turning and backing up but we know this will take time.

Here is a picture from today after Zoe was perking up from the fluids. These flowers are such a comfort toy for her right now. She loves chomping on it. As if she doesn't have enough going on- she has three molars coming in right now. We have tried different teethers but the flowers are what works best. So go ahead Zoe- chew away!

Thursday, March 19, 2009

I would Pay a lot of Money for Sleep!

There are so many things that I want to post. So many cute videos and photographs. However, we have not had much time for posting. Zoe is having a very tough winter. There has only been a few weeks that she has not been ill.

I don't have the time or energy to write all the details but to sum it up, Zoe has a gastro infection again and we had to go to the Emergency room on Wednesday to have her levels checked. Most of her levels were fine. Some were a little funky but could be due to the fact that she has been puking and having diarrhea for six days. They attempted but could not get IV access to give her fluids so instead we went home. At that point she was drinking well.

Yesterday we felt that Zoe was getting worse and she was refusing to drink much at all. Her skin tone went from dusky to outright purple and her extremities were very cold. So we called her pediatrician who said we should return to the emergency room to get her re hydrated. Knowing that she is a hard stick, they would most likely insert an NG tube. Since we are comfortable inserting the NG and maintaining her at home we opted to stay home instead.

Last night we inserted the NG. Today we went to see the doctor. The great news is that Zoe has really perked up today. It is tough to gage how sick Zoe is since she is so easy going. After she got 12 hours of fluids into her I started to realize how dehydrated she had been. Now she is running around the house in her walker and just as happy as can be. Although she is pissed about the tube being there and keeps trying to yank it out.

I attempted to nap while she was napping but she woke up after 18 minutes. I offered her a million dollars if she would sleep some more but she was merciless and demanded that I get up to entertain her. I am so happy to see her perky again but I would pay someone some serious money if they would come over and let me have a nap! It is times like this that I wish our families weren't so far away and we could rely on them for some help.

I better go- bossy pants is telling me she is stuck in the corner and can't figure out how to back up. It is really great to see her feel better so quickly. We hope that by Sunday we will be able to pull the NG tube. Hopefully all goes well until then.

Tuesday, March 10, 2009

Zoe turns two

Zoe's birthday photos

As some of you know, Zoe just turned 2- a very big event around here. She was sick for the week before her actual birthday, so we had a small family party on the 21st (Zoe's grandad was here and got to get in on the cake!) and then a slightly larger friend party on the next Sunday.

This video is a slideshow of pictures- one per month since Zoe was born. At her one year birthday I printed out pictures by month for ages 0 -12 and stuck them on the living room wall as decorations for her party, and I continued doing it this year. As long as our wall space holds out, I plan on making this a major part of the birthday decorations- it is really nice to look back over the months/years and see where Zoe was and where she is now. So for those of you who cannot come into our living room and see the actual pictures here they are. Months 0 to 24 of Zoe Alexander Ross.

The song, by the way, is "Only you" by Joshua Radin. When Zoe was born and admitted to hospital for 3 weeks it was the only CD we had with us so we listened to it A LOT in those first three weeks. Zoe got rocked to sleep many times to these songs- good thing it was a good CD we happened to have in the car and we weren't listening to Milli Vanilli or Boney M or something like that (not that we actually would listen to Milli Vanilli or Boney M but . . . )

My rules for picking the pictures is to limit myself to one per month, it has to only have Zoe in it (mostly anyway) and as much as possible it should highlight what is going on in Zoe's life at that time. This can be a challenge, as we take a lot of pictures! But I think I did alright- that is one of the great things about doing it- it really makes me appreciate who Zoe is and what she has done.

The first picture is Zoe about 30 hours old, already extubated and with my thumb holding her hand. The next one (maybe 12 days or so?) shows just how tiny she is- my hands wrap around her chest. Then she gets home on the NG tube and then into one of her preemie outfits people gave us, looking pissed and greasy (she had cradle cap so we were told to rub olive oil on her scalp. Olive oil- good for Italian food, good for babies- who knew?) She wouldn't fit her newborn clothes for several months yet.

In August 07 we went to Scotland and England- here is Zoe contemplating Carlyse cathedral (which her Scottish ancestors sacked and partially destroyed way back when- sorry about that!). In September she started smiling- before that she had not done so and we didn't know if she ever would. She used to always stick out her tongue to smile. The two October pictures in he slideshow how she developed in terms of grabbing stuff and using her hands. In 07 it was all hand over hand, guiding her; in 08 she was all about grabbing it herself. This picture actually documents one of the first times Zoe attempted self feeding (hence the pumpkin goop on her face) It wasn't an attempt with anything particularly edible, of course, but that came later on. Incidentally, I think both pictures were taken at our friend Amanda's house in Pittsburgh.

In November we met our new 1p36 friends (including Jacoby, whose back you see) in Jacksonville for the 1p36 conference. Zoe's facial expression here is very similar to a lot of the photos to come. December we had lots of snow, which lasted a long time that year (see March). Then there were new toys for Christmas #1 and Birthday #1. In April Zoe got her glasses, and her tracking and hand eye coordination really began to improve. It was hard for Genevieve and I when she initially got her glasses - it meant admitting she was pretty profoundly visually impaired at such a young age. Although she looks adorable in her glasses, it still is sometimes painful to realize what they really mean- I'm sure the 1p families out there can understand. Now she has had them so long and they help so much she just doesn't look like herself without them on.

More solemn glasses looks, and the shirt that started out as a long dress many months before- she has many of these. Smiling, and our crazy girl who likes sleeping with the blanket over her head. This blanket was given to her in the NICU- it is a project Linus blanket and she used it every night since she was about 10 months old or so. Project Linus is a bunch of knitters ( I imagine them all as old grannies but there may be some younger ones too) that knit blankets and donate them to hospitals for infants to have a comfort item. In the course of our careers, Genevieve and I have given away hundreds of these, but now find ourselves on the receiving end. For the life of us we can't recall who gave this blanket to us- we just remember it showing up in the NICU.

Zoe's vibrating toy and her crazy hair. Bathing in the kitchen sink (still fits!) Another hospital admission and NG tube- this is Zoe on the the last day (I think) of a short stay. Another skirt/shirt. Second Christmas- Zoe was so much more into her gifts and toys. Here she is tasting her Aunt Muriel's/ Uncle Walter's/ Cousins Elaine and Zoe's kangaroo family. January self feeding (whip cream) and February's pony walker (her first attempt- she did amazingly well and far exceeded anybody's expectations. A great step we are still exploring as a family.)

Hope you enjoyed the slideshow, and the accompanying commentary. Happy Birthday, Zoe.

Love Daddy