December 2008

Sorry for the long time since I've updated her site. I usually communicate with most of you on a regular basis so I forget to update. Not too much has been happening. Stacey lost another tooth and now she is missing her two front teeth which is pretty special esp. at Christmas time. We were donated a Vita-Mix blender so that I can blenderized some regular food for her so that she isn't getting just formula. She still eats some by mouth but not much as usual and with 4 teeth missing in the front of her mouth eating and drinking has become more difficult. We have a genetic appointment on the 24th of March. I don't remember if I mentioned that several of Stacey's doctors are thinking that she has a genetic condition. She is doing sooo great at school. She is really starting to think alot about things. She asked me last night without prompting "mom what do you want for Christmas" and I said "I just want for you to be happy" and her reply was "Awww that's sweet" It was so amazing that she was thinking and answering appropriate meaningful questions. She even made a friend in her mainstream class which is also amazing and without promting or proding she asked me if she could have her friend over for a play date. We are very excited about this Christmas. Stacey has all kinds of questions and answers in her springboard about Christmas and she has been talking up a storm with it. The therapist finally ordered the mount for her wheelchair. It is an arm that will attach to the wheelchair and the arm will hold the springboard. Very exciting. We got a lift on our van. It only lifts the powerchair. But I am ok with that. the ramp we were using was so heavy and had sharp edges that cut me numerous times. We are very thankful for it. We got it donated via a grant. Stacey was in the SanMarcos Christmas parade and pulled a wagon with a snow/sand girl in it that the girls made. You know if you have to be in a wheelchair you might as well make the best of it and have fun. The video is attached. It's short but cute. Sunny and I are doing great no new news from us. we hope that you all have a blessed Christmas. Enjoy your families and give them all big hugs.

God Bless,
Cherice, Stacey and Sunny

Update 10-31-08

Hello-
We are still here. No contact precautions and no C.Diff!!! Thank God because that is a nightmare. So she is getting better. They want her to be able to breath deep and be able to cough to keep bringing up the junk in her lungs but Stacey isn't able to breath deep she can't even blow a bubble. So I am not sure what they are going to do. We are still waiting for the doctor to come and as usual I want to go have a shower and you know that as soon as I step out of the room the team of doctors would come walking in. So I'll sit here stinky...lol. The hospital is throwing all the kids who are allowed out of their rooms a halloween party and trick-or-treat with nothing edible. So she is excited about that she is going to be pediatrician. She has an Angel-Cake costume at home but I didn't know when I was packing to come down here 1 that we would be here this long and 2 that the hospital would have a halloween party. So I'm sure it'll be cute. I'll let you all know what the doctors have to say once they come in. :-) Thank You again for all of your continued prayers.

Love and God Bless,
Cherice and Stacey Lowry

Update 10-29-08

Hello-
We are still here. Stacey is doing a little better today. She is still receiving breathing treatments around the clock and then getting suctioned. She is still sleeping alot and not eating by mouth. Thank God for the feeding tube. She is tolerating her g-tube feedings which is awesome. We think she might have C.Diff again so we are awaiting the test results that will be available in the morning. I am really hoping that she doesn't have it it's nearly impossible to get it out of her. It's an incredibly strong strain of bacteria. So we will just continue to pray for quick healing and no C.diff. I will let you all know what happens when we get the results in the morning. Have a good day and thank you for all the continued prayers.

God Bless,
Cherice Lowry

Update on Stacey in the hospital

Stacey is doing better. She got the breathing tube out and is breathing on just oxygen and her own. She is doing better. So everything that has evolved is the infection in her right ear, fevers, double pneumonia, and an e-coli infection that was found in her urine. The docs are going to start her g-tube feedings tonight and see how she tolerates those. She is being moved to the IMU (intermediate medical unit). She will be there for a few days and she needs to be up and at her full speed for a couple days before they let her go and at this point she is still exhausted from everything and sleeping all day and night long. When she does decide to wake up she can eat whatever she wants. And we will wait and see what happens. I will update as I get more information. Thank you for all your prayers they have been a huge blessing. When I was driving to the hospital after she had left with the transport team and I had gone home and packed I turned the radio on when I was almost to the hospital and there was a song on the radio and the name of it is I'll walk by Bucky Covington. I want to share it with you. Thank you again for all the prayers they've been wonderful. We love each and everyone of you.

God Bless,
Cherice Lowry
I'll Walk

Stacey in hospital

Ok so here is the offical story. Stacey had been running fevers since ealry Friday morning and they were being managed with tylenol. And then Saturday we were carving pumpkins at my best friends house and she was a lil sleepy and little feverish but not much. So when we were on our way home from her house Stacey had asked to go to the hospital she wanted to see a doctor. So giving her the benefit of the doubt I packed her and Sunny up and away we went. We got there and were called back for vitals supper fast and then not even 20 minutes later she was called back to a room and there the docs discovered a pretty bad ear infection in her right ear. And they gave her tylenol with codiene and decided not to put her on the antibiotic because of her history of the C.diff the infectious disease that she has in her gut and is "reactivated" when she is on antibiotics. We would just go see her primary doc on Monday. So Saturday night she got a dose of the tylenol with codiene and then again early Sunday morning and then with hope of her waking up at some point and because the tylenol with codiene was making her too groggy I gave her half a dose. And then she was still asleep and I decieded to let her sleep since she was not feelin so hot. And at 2pm I heard her breathing wierd almost like she was choking or gaging and I went to check on her and her lips were blue and she wasn't responding to me and I went to get the suction machine to try and suction her and she didn't even flinch. So I called 911 and they were on there way. They got there and she didn't respond at all to them not even to the chest rub thingy they do to try and arose people who are not. And her O2 sats were 76 wihich is horrible. So off we went to Tri-City and they took a chest x-ray and discovered that she has double pneumonia so they had to intabate her to breathe for her. And started 2 IV's one in route to Tri-City and one in the room. So they called Children's to come get her and they did in there special transport ambulance that they have. And they spent a good hour working on her getting her ready and stable for transport to Children's and then it took another hour for them to drive down here and upon arrival they put a central line in her chest so that they can access that for blood gasses and to draw blood without poking her. And then I went home to pack up to come stay with her down here. And my dad drove down seperately and we got here pretty late and I attempted to get some sleep. Today (Monday) she got her breathing tube taken out partially because Tri-City put the wrong kind in her. And they wanted to see if she could breath on her own with just a nasal canula and suctioning. There is a fine balance between the vent being therapeutic and it starting to cause damage esp. because she had to be sedated. So all in all she is doing better. Still not 100% but getting there. She is still currently in the ICU. I will update more as I know more. Feel free to leave comments or to e-mail or call me. Thank You all for your wonderful prayers. God has definetly kept His hand on her. And He is The Great Physician.

Love and God Bless,
Cherice Lowry

PowerChair

Stacey is driving her power chair pretty darn good for only having it for a week. I sat in it the other night and drove it around a little bit and that stuff is not for the faint at heart. I'm very proud of her for doing what she has been able to do. I have only one picture so far and it's on my phone. I will get more soon. We have been supper busy and of course hit the ground running when the school year started. Girl Scouts is wonderful. Stacey and I get the privilege to speak on being a disabled girl scout next month to the county council. We are supper excited. Nut sales are quickly approaching and we will be doing that at the same time we will be doing the school fundraiser. lol We like to keep busy that's for sure.
We changed formula and that seems to be going much better. No more diarrhea YAY!!! I sure am excited and Stacey has got to feel better not having her insides a messed up.
Stacey started mainstream classes this week. She seems to like it she told me she already has a friend in the class so that's great.
All is just really well. God continues to richly bless our lives daily and we thank Him for that. I'll let yall know when more happens.

Love and God Bless,
Cherice and Stacey Lowry
p.s.don't forget to either join our Shamu and You team or donate to Rady's Children's Hospital Family Walk.

Power Chair and update

So Stacey will be getting fitted for her power chair on Tuesday!!! Praise God. Then she will have to go in everyday and work with the therapist on driving it really well. Which we are so excited about and then they will release the chair to us the following Thursday like the 11th or 12th. Totally awesome!!

We had a good summer better than last year when she was in casts for nearly two months. We went swimming alot and went to alot of movies. Had fun :-) School is now back in session and loving it. Stacey will begin mainstreaming next week or the week after. Totally exciting. And then her birthday! We are going to have another big birthday party. Which will be great. Not in my house again 21 girls and a few mom's was way too many in our little mobile home...lol We will probably have the party at our parks clubhouse. Cinderella theme again of course. :-) Stacey is Cinderella. And for her birthday she has asked to feed a baby elephant a bottle. I don't think I can pull that one off.

Girl Scouts is already starting up too. :-) We are very excited about that. Stacey is a second year brownie. :-) And earning more and more badges all the time. I recently became SanMarcos' (because that's where our troop is out of) Inclusion Coordinator. I will be helping all girls with any sort of special need become more included in their troop. And make sure that all activites are safe and fun for all the girls. After all our moto is Every Girl Every Where. I will also be offering to teach a disability class of sorts to troops that want to learn more about girls with special needs. :-) I think that is about all that is going on for now. I will post pictures of Stacey when we get her power chair. Hope all is well with everyone else.

FYI: Stacey and I are participating in the 2nd Annual Shamu and You Family Walk for Rady Children's Hospital. Anyone who wants to donate money and our join our team We are the princess' and pirates. Here is the link to our site and more info on the walk. http://ShamuAndYouWalk.kintera.org/princessnpirates We hope to see you there!!

Love and God Bless,
Cherice and Stacey Lowry

Update on Stacey

Hello-
Sorry it's been a while we've been super busy. Stacey is well. She was sick most of March and all of April and part of May. She was out of school all but 4 days in April. We did a bunch of testing and she has an immune deficiency in her IgA which is the part of your immune system that is the first line of defense like in your mouth and nose and tummy fluid to make sure you don't get sick and Stacey's is pretty much nonexistent she has 1 and the upper end of normal is 200. There is no way to replace it. It's just something she has to live with and we've been taking more precautions with her and who she is around and being diligent about getting her hands cleaned with antibacterial and keeping her wheelchair tray clean.
Stacey is nearly done with 1st grade she only has a couple days left. And then she'll be a 2nd grader. Hard to believe. She has a very loose tooth which she is hoping comes out soon because she wants to go to Toys"R"Us with her PaPa with the money that the tooth fairy brings. She is getting her first power wheelchair well I should say electric wheelchair since her wheelchairs have always been powered...lol by me :-) this one she can drive on her own. :-) time for her to get some of her independence. She's growin up fast. She got her ears pierced last week when my grandma; her great grandma was in town from Colorado. So she's all excited about that. She didn't really even cry. I was so proud of her for being brave. She's all into picking earrings out now and wanting jewelery and lip gloss and all this grown up girl stuff. And oh my goodness it's Hannah Montana this and Hannah Montana that. But it's sure great to see her interested in typical girl things. :-)
It's late and I can't think of anything else at the moment. So I will write more later. Have a great day!

God Bless,
Cherice, Stacey and Sunny

Check out my Slide Show!

Update on Stacey

Wow I looked at the sign-on page and it said I hadn't blogged since April 1st. That's a little sad that I haven't been on here. I have been supper busy though. So here we go.

Stacey and I were out in the garden pulling weeds one Sunday afternoon and then she woke up Monday morning sick as a dog. So started her on medication and then 2 1/2 weeks later still not better and was developing fevers and her face was sore. Usually her entire body aches but her face being sore was a new one for me. So That day we had an appointment with another new doctor an immunologist and she didn't know what was wrong so she had the ENT come in and look at Stacey and the verdict is that her salivary glands are infected. I bout fell off my seat how does that happen? And WHY? some day's it's a little irritating that I have more questions than answers. So she got another antibiotic. UGH. And then the immunologist who specializes in allergies came back in and tested Stacey for some environmental things. Eucalyptus, Ragweed, Palm, Sage, Mulberry, Mold, Dust, Dogs and Horses. And she's allergic to all but dogs, horses and mold. I chuckled a little at myself thinking that Stacey is allergic to just about darn everything that grows indigenous to our area, especially eucalyptus and palm. They didn't test for food allergies because we were more concerned about environmental ones right now. And then we discussed the possibility that Stacey might have an immunodeficiency disease. So she was only going to run a few blood tests and I told her well if your going to run 1 you might as well run as many as you can so that we can rule things out ASAP. They are testing her for Cystic Fibrosis, and a condition where the body is unable to fight off certain strands of bacteria and viruses, and checking her blood at a very in-depth level. We will have some of the results the next day but most of them get sent to the MAYO Clinic and won't be back for weeks. I'm really interested to see what the tests show if she does have something wrong it sure would explain alot. She is also getting a CT scan done of her head to take a look at all of her sinus cavities and look at her tonsils and adenoids to see if there is anything they can do that way to help her from getting sick all the time. She is also getting a sleep study done to see if there is any way to help her while she is sleeping...for example to look at her breathing to see if she might need oxygen or a C-pap machine or an apnea monitor. Or positioned a certain way to help her breathe easier. She has been out of school for almost 2 weeks and she will be going back tomorrow hopefully for a full day. Tuesday she has doctors appointments and same with Wednesday.

We have a possible solution for getting her current and future wheelchairs into our van. We should qualify for a grant to get a lift that will only pick up the wheelchair itself not with her in it and put it in the van. Which that alone would be an answer to prayer and a blessing to us. We should know in a couple of weeks weather we will be able to get the grant. If not I haven't given up hope I still have other avenues that I can explore if need be :-)

Sunny is doing great and bonds more and more with Stacey. He has been a huge help in comforting her when we've been at doctors offices. When she had her allergy testing done he was snuggling her and she was feeding him treats and then he would kiss her hand. It was precious and priceless. We really love having Sunny in our house with us. he too is a blessing.

I think that is all for now. If you have questions about anything please ask me. I would rather answer questions than have something assumed. Thank you for keeping up with us and I will let you know ASAP when I hear something from the blood tests.

Love and God Bless,

Cherice, Stacey and Sunny :-)

New Pictures

Ramp Van

Hello my name is Cherice and I have a 6yr old daughter named Stacey. She is the light of my life, and very special to me. She has Quadriplegic Cerebral Palsy that originated from her not being treated for her jaundice when she was just a few days old. I didn't find this out until last fall. Stacey has had many, many medical complications arising from her having Cerebral Palsy and a genetic blood disorder called Factor 5 Liden that I have too and will pass on to all future children. She is growing up so big and beautiful and has an even more beautiful mind. I have done my absolute best at advocating for her. I used to be a nurse and work a 40+ hour work week and have a nurse to come in and take care of Stacey and that all changed on Sept 4th 2006 when I rushed Stacey to the hospital. She was very ill and I wasn't sure with what but I knew she was ill and she ended up having an infectious disease in her intestines and pancreatitis which is very rare in children. While we were in the hospital for those two complications we were awaiting a Gastrointestinal feeding tube placement and a fundoplancation which is a procedure that they do on children with severe Gastro Eshpogeal Reflux Disease (GERD) and when that occurred Stacey ended up with a bowel obstruction that snowballed into many other medical problems. She ended up needing a surgery where they opened her up all the way down and did "exploratory" surgery to find what went wrong and the surgeon had sewn her large bowel to the back of her stomach during the process of the surgeon doing the fundoplancation. When she got out of the surgery her vital signs were not stable at all and she ended up retaining alot of water and had to be rushed to the ICU and was put in a drug induced coma. She was in a coma and in the ICU for a week. The total time in the hospital was 2 months and since then I haven't been able to work because she requires even more care than before and physically she isn't the same child she used to be or could have been and now is subjected to a life in a wheelchair. I am ok with her being in a wheelchair I just want to make sure that she is getting all the services she needs and is doing everything she can to her full potential. I also don't want to her miss out on something that could benefit her. So I bravely asked her therapists and doctors that she be considered to receive a power wheelchair and they thought it was a great idea. So that leaves us here, where we are today. She is now being fitted for a power wheelchair and will be getting hers within a couple months. We are an active bunch. I am a co-leader of a girl scout troop and Stacey and I are disability/inclusion advocates for girl scouts. Stacey also has a new service dog named Sunny, who helps her tremendously. We have a minivan. But no wheelchair lift or ramp. I went to price used ramp van's and they start at $40,000.00 Being a single mom with limited income. I certainly cannot afford a ramp van for Stacey. So I am asking for your help in finding funding sources to help with this gargantuan cost. I look forward to talking with you in the future. I have enclosed a couple photos of Stacey and Sunny.

Thank You,
Cherice, Stacey and Sunny Lowry

Check out my Slide Show!

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When your going to have a baby, it’s like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean ‘Holland’? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland, and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and woebegone to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going, from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of you life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away…because the loss of that bream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Emily Perl Kingsley

New Blog :-)

Hello Everyone!!-
Welcome to our new little corner of cyber space. I was tired of only being able to put up a few photos of Stacey. I think she should have all the photos she wants of herself up there :-) so we moved :-) at least there was no packing to be done. Next time I move I vowed that I would hire somebody to do it...lol. So I will be on here more frequently than the caringbridge site and it's easy to find. You can even google search her blog title and it will lead you to here. I am going to only put up her older pictures and some of the older posts when I have some more time. I will put the poem "Welcome To Holland" on this blogger page. :-) So this is our little intro and the official blog will be next have a blessed day!!