Posted by J.L. BOSTICK at 9:21 AM
Wednesday, June 30, 2010
For the longest time Tom and I have been trying to figure out just what to do for Miriam that would make her birthday extra special for her. We have decided that we need to do more things together outside the house as a family and in my search I found the perfect place. The place is called Morgan's wonderland and it opened it's doors on April 10th 2010! A special theme park in San Antonio and the first in the world of its kind dedicated and made especially for special needs children. It is a giant magical wonderland of experiences that would make Miriam's senses roar and we are so excited to make the appointment for her birthday in September. That's right I said appointment! The park limits the amount of people on a given day and asks that you make reservations. Which is an excellent idea since many special needs children cannot handle crowds and noise. (Miriam being one of those children) Special needs children are free of charge and every other person over 2 years old is only 5 bucks a head. An amazing price for such a special place! This place opening means a small step towards indifference, it is a place where families can be one. I love it!
On another note I just had to take a photo of the beautiful lilies Georgia ran through the door and handed me. She and Tom went on an "outing" and decided since I was feeling a little low they would surprise me. Tom usually buys me roses when I am feeling down in the dumps but I welcomed the change. Lilies are my absolute favorite. Unlike a rose, they get prettier everyday!
Tuesday, June 29, 2010
What do you get when you take septo optic dysplasia and mix it with Pan hypopituitarism in a 5 year old with Optic Nerve Hypoplasia? You get a blind, sickly, seizure prone kid with horrible skin conditions! Of course the fact her parents have very sensitive skin and both suffer from Psoriasis which is an inherited condition does not help. Miriam has Ezcema, Psoriasis and the new skin culprit.......ROSACEA! And you know what makes having Rosacea with the other conditions very difficult? The medications that help the other conditions IRRITATE the Rosacea! Right now she has an outbreak of Psoriasis on her neck (it also breaks out around her nose often), it is red and flaky. We are thankful she does not suffer plaque psoriasis like Tom, instead the suffers the kind her Nana has. The Psoriasis came on after strep throat just like Tom so we are on the watch for plaque. Her excema has her legs, thighs and bum torn to bits and now her face looks like someone slapped her on both cheeks. When it first appeared months ago I was home with her and it just showed up out of nowhere. Tom came home and you know, he actually did think I slapped her. (you would think he would know me better than that!) So my question to the Dr when she goes this next time, "What do you do for a kid who has every skin condition in the world?" I feel so bad for her, because I KNOW it hurts. She is so brave with all the stuff she has to put up with!
The redness is A LOT worse in person. :/
I read this article the other day on the Beike Biotech website about their stem cell procedures. They have merged with another China based company and have every intention of going international with the procedure thanks to the merger.
Beike Biotech Goes international
Tom and I still very much want Miriam to have this procedure. We have just been dealt a really bum deal as far as fundraising goes. Our biggest obstacle was getting stuck in a town that had just been screwed over by a family trying to raise money. This family raised tens of thousands of dollars from people who lived in Taylor only to later find out they spent all the money on drugs and new grown up "toys" all while their 2 terminally ill children lay dying. People like these truly do not deserve to be a part of the world.
Not to mention the "curse of the news", it seems every news venue we got to actually write or report about Miriam conveniently forgot to include any contact information so nobody knew where or how to donate. The Austin American Statesman and the paper I grew up with REFUSES to post anything about our child but they posted about an El Paso teen who was getting the procedure after constant requests from friends and family. I still do not get how a teen that lives 400+ miles away is more news worthy than a little 5 year old girl who lives 5 minutes away. But at the risk of sounding like a bigot, this young man was Latino and the statesman has a tendency to favor those of non Caucasian decent as far as certain news stories are concerned. We were overjoyed to hear of another person having the procedure but in all honestly, it should have been Miriam's story as she is a local.
Fundraisers have been failures because the local Taylor paper seems to conveniently omit our ads so nobody ever knows they exist. Taylor has serious posting rules, so putting up a sign would get us fined. If I were a crazy person I would swear people were out to keep our blind child from ever having vision. It feels as if Miriam will never have the chance at having this procedure. BUT hopefully this step Beike is taking is a step in the right direction. Not having to go all the way to China for the procedure would be a God Send because it would save us tons of living expenses for the month we would have to live there. And "maybe" the procedure would cost less here or she would be able to get into the trial. For the longest while things were looking grim for our baby, now it seems there is now a little flicker of light. We would still have to raise money for the procedure and thanks to the ridiculous rules in the US where they will ignore the years and years of research already done and the insane amount of positive results our government will require their own research so they can make the most money off of it we will have to wait 3-5 years.
Please pray the procedure makes it here quickly. It has been over a year since we began fund-raising, I would really like to have my faith in human beings restored sometime soon and let my daughter have her chance at seeing the sky.
Monday, June 28, 2010
Well, I think Brobee is giving us payback for eating him limb by limb. All of the girls since Sunday morning have been suffering with stomach problems (Miriam has a huge rash on her bum & upper thighs). Georgia who had more cake than all of us has had it the worse. She actually got sick with vomiting, tummy issues & a fever. We are blaming Brobee because everything is GREEN! I knew that Yo Gabba Gabba was no good and now I know for sure! I was up until 2am this morning with poor Georgia who came to me exclaiming "Mommy, I think I need a Doctor!". She is feeling better now, still having tummy issues but the fever is gone and she has managed to hold down the pancakes , sausage and bacon she had for breakfast. I am guessing they are allergic to the dye in the cake. It occurred to me that Miriam's rainbow pink cake made them all sick as well. So from now on, NO MORE PRETTY CAKES. I think I am going to have to stick to plain white or chocolate frosting's and use cake toys and other things to decorate them.
This birthday is definitely one for the record books! Sorry Brobee but you are going in the trash!
EDIT: On second thought I went ahead and trimmed off all the frosting then used the little bit of cream I had left over to re-frost. No sense in wasting a perfectly good cake. Although when Georgia saw me cutting Brobee's head she screamed "no, my Brobee, where Brobee go?" I returned with "don't worry baby, Brobee is still here in spirit". Not sure why that helped but she said "OK, re-frost Brobee".
RIP BROBEE 6/25/10 - 6/28/10
And all that was left, was his head.
Saturday, June 26, 2010
Georgia's birthday was a perfect day! This was the first birthday she has really gotten excited about, the big 3 years old! She chose to have a Yo Gabba Gabba themed party with a Yo Gabba Gabba cake. I was up literally until 5 oclock in the morning working on Brobee. I had to bake 3 cakes, make whipped cream frosting then decorate. I also had to make every single Yo Gabba Gabba decoration because let me tell you, you CANNOT find any Yo Gabba Gabba anywhere. Not a toy, not a decoration and certainly no bakery cakes which makes a Gabba birthday loads of fun for mommy and daddy. But we managed to pull it off and it was a success.
I decorated the house while the girls played outside with daddy in their new swimming pool. Georgia got to open one present before her party which was a Ni Hao Kai Lan swim suit that the second it came from the bag just about made her faint. She LOVES Ni Hao Kai Lan, yet another character which is hard to find. I swear if it doesn't say "Dora", "SpongeBob", "Barbie", or "Princess" you cannot find it. So naturally once I saw that suit I had to get it. The swimming pool was new as well, a great Big Lots find and one of the best kids pools I have ever seen. Another splurge birthday buy that was well worth the hassle of blowing up. Poor Tom sat outside in the blazing heat trying every way possible to blow up this pool that would not fit in the trunk blown up to take to the gas station for easy set up. From the small air compressor, to the foot pump , to good old fashioned man powered lungs, nothing worked. We were saved by a neighbor we barely know who took pity on my sweat soaked husband who was quite possibly half a second from a heart attack. The neighbor brought us a big air compressor (well, bigger than ours) and the pool was up and ready in a jiffy. He was rewarded with a Brobee cake leg later on in the evening. ;-)
The girls had so much fun playing in that pool, a little neighbor girl came over and played with them. Originally we had planned on this being a family only birthday party because a house full of 3 year olds just was not in the cards for my sanity at the moment. But I am glad she came, it made it extra special because Georgia and this little girl spent half the time in the pool shooting water guns at daddy who was fully clothed. I know from experience that there is nothing better as a little girl than forcing daddy to join in on the action. Tom came into the house and exclaimed "I don't know what made them start shooting me". I laughed and said to him "because you are the daddy, it is your job to take one for the team"..lol Some of my fondest memories are when my dad would come out and play with me. Especially pool and sprinkler days. There was just something amazing about watching this big strong man laughing and carrying on like a child. So I have no doubts there were some wonderful memories made.
After the pool they all came in side and had dinner. Georgia chose for her birthday meal BBQ chicken (oven BBQ'd because with all the outdoor carrying on, there was no way we were lighting a fire), cole slaw and corn on the cobb (Georgia's favorite food). Then we revealed Brobee to which Georgia exclaimed "WOW, Brobee, Brobee cake mommy!" and at that moment this cake that took 6 hours to make was worth every second. We had quite a bit of Brobee which Georgia could not get enough of, throughout the day she had a total of 6 slices of cake including Brobee's eyes. After cake of course we opened up the presents, again which she loved. I made a special box which was filled with dress up clothes , Tutu's, a princess dress, jewelry, tiara, etc..., she got princess shoes, some Ni Hao games, a coloring book and a pink baseball bat for Tee Ball.
I am so happy the day went so well and that my sweet monkey had such a wonderful time. Even though birthday parties are madness in the end they are worth it. Happy Birthday my sweet Georgia!