Sunday, August 10, 2008

Weekend Update and Zoey's bloodwork results ....

Alright,I did let you off easy yesterday with the short post. Although I did request a lot of out clicking to fully get my point across. Thanks to all who took the time to do it. This issue,this topic can never be over done. We need to continue to educate those around us on behalf of all the ones we hold so deep within our hearts.Even and most especially those we do not know and who cannot speak for themselves.With that said,this post may not be as short.Just a whole bunch of random things to talk about.First,Jess and Caitlin are of course home and I am loving it. Enjoying each moment. We just have so much fun together,really. They have fun together. They spent a great deal of time yesterday and today making friendship bracelets. Yes,my 21 and 19 year old , just sitting around making friendship bracelets. Even one for me. We have been hanging out together.Watching the Olympics, catching up.Me,feeling incredibly fortunate, that they do live close by and that they like coming home.Reminded in these moments, how lucky I am to be their mom.Last evening we all headed out to dinner. All of us. Taylor's boyfriend Brandon in tow. Before dinner we went to a local college,California Lutheran University,for a very special art exhibit.A local artist,Noble "Ace" Powell, who has a daughter M.E.,who happens to have Down syndrome, has had his artwork show cased there for the last two months.This particular collection was paintings of mothers and their special needs children.They were amazing paintings. They were breathtaking. There were only 8 paintings but those 8 were some of the most beautiful portraits I have ever seen. Next to each painting there were attached writings,stories and poems, that are specific to the special needs community.For instance,"Mother At The Swings","Welcome to Holland","The Special Mother" and,Patricia Bauer's article on what impact medical advancements,specifically prenatal screening, will be to the the Down syndrome community as we know it today and more importantly the future. We were the only people there, as it was the end of the day and to be able to take it all in,just us,by ourselves, was pretty special. We then headed to dinner and then grabbed some yummy Ben&Jerrys ice cream. Sunday found us all heading out to church together. Something we don't often get to do now a days.I was sitting next to Caitlin and I remarked to her ,as I looked down at our row,"Wow,I have a lot of kids."It is amazing when I see us all assembled together. Beautiful and amazing. She said,"Can you imagine what it will be like when we all are married and all have children of our own?"I can't imagine and I can't wait!! The rest of the day we did errands and just tried to hang out a bit. Our weekends go so fast and we have so much to try and cram in. Necessary stuff mixed in with the fun stuff. Oh,and yeah,Mark was home! The program he was suppose to work on got shifted around a bit so he was off the hook. Very nice surprise indeed. Boy, did he need the break. Just looking at his eyes will tell you he is a bit worn out. As for Miss Zoey.First,did we almost have a major medication issue tonight. Just as I was getting her evening medication ready, I went to the cupboard and just about lost it when I picked up the empty bottle of Topamax. Yes,empty. We did call in the prescription ,however it would have been helpful if we had picked it up. For some reason,maybe because Mark hasn't had a day off in awhile but for some reason it felt like a Saturday. The day came and went and well, we forgot.We scrambled and called a 24 hour pharmacy and they were so kind as to give us two tablets until we get ours tomorrow.Crisis averted.Now as I mentioned in a post a few days ago, Zoey has not been herself.Nothing too earth shattering except some marathon napping. Well,that continued along with others noticing she was a little off.No way was I going to be able to wait until Monday to get things checked out. Due to her blood disorder we have a standing order at our local hospital for all blood draws. We use to have to go to Children's,which ended up being an all day appointment in the oncology/hematology clinic. Not fun.Instead we do it locally and if anything out of the ordinary pops up,well, we unfortunately know where to head.Our pediatrician happened to be in Saturday morning and wanted to see us before we headed off to the hospital. He checked her out. Didn't see anything that stood out but knew that outward appearances don't necessarily count,especially where Zoey is concerned. He added a few additional panels he wanted to check and off we went. Nothing like a drop in at your local hospital lab to start your Saturday morning off. Zoey was a trooper,we left and then we waited. Waiting. The part I hate.We spoke to him a short time later and I guess mom's instincts were right but thank goodness not nearly as serious as I often fear. She has something brewing. Probably just fighting a virus. Her lymphocytes are off with a Atypical cell present but we were assured it is probably consistent with a virus. Her platelets were good. Really good for her. Her white count was great. As well as her red. So good news but boy today she is not feeling well at all. No smiles. No playing. Very tired and well,not our happy little Zoey.No actual outward signs of whats going on. I hope today is the day it is all peaking and tomorrow she starts to pick back up. Please keep Zoey in your prayers, as we would really like to see her feeling more like her carefree Zoey self. .Well,that's a wrap for the weekend update.Thanks for hanging for the long post. I am always grateful.

8 comments:

Kele said...

Heather, I will most certainly keep Zoey in my prayers.

p.s. I am so pleased Mark was home to join in the family fun!!

Kele said...

p.s.s. good news on the blood work tho, glad it wasn't anything serious!!

Ian said...

hi again, just popping by to say i popped in and to remind you that you're never far from our thoughts and i love the pictures - snapshots of joy

Molli Salzman said...

Heather,

You do not know me but I visit your webiste frequently. My son was diagnosed with IS in March.

Zoey is SUCH a beautiful baby. Through the computer, she just looks like she is filled with so much happiness. She is just gorgeous:)

I will be saying a prayer for Zoey.

Take care,
Molli Salzman

Reagan Leigh said...

I'm glad you had such a wonderful weekend with your girls. I'm glad the blood work came back OK...I sure hope Zoey is feeling better soon and back to her happy little self!!

Anonymous said...

Thanks for mentioning my show at Cal Lutheran. I took it down testerday but had a wonderful response. Best to all and thaks again for the kind words.
Noble Powell
www.noblepowell.com

Anonymous said...

Heather - I am so glad you got to see Ace's show. He is a talented artist but more importantly an awesome dad. He gets it. Happy healthy 2nd b day to Miss Zoey. Good checkups are a blessing.
Kathleen

Topamax Side Effects said...

My name is Melissa Dunn and i would like to show you my personal experience with Topamax.

I am 34 years old. Have been on Topamax for 4 weeks now. week 1- 25mg in PM, week 2- 50 mg in PM, week 3- 75mg in PM----still at 75mg and is working well. in the 1st week I had 4 migraines and I have not had a migraine since and I am doing well. I think I found a good dosage. I have lost 1 lb a week on Topamax, but that is not a negative side effect for me. I was on Relpax before and it worked well, but with insurance 6 pills were $30 and I was going thru 6 pills quickly.

I have experienced some of these side effects -
soda taste bad, tingling in toes and fingers, tired

I hope this information will be useful to others,
Melissa Dunn