Good News, Accomplishments
& Milestones
of our Precious Trisomy 13 Children

11-12-08

Hi, Everyone,
I want to share our joyful news with you all -- Maxie started to walk yesterday! I knew something was up when he let me support him by holding his jammies from the back (instead of holding my hands) while he walked in circles around our little house in the morning. Then, at his PT appointment, after walking a little bit on the treadmill as usual, we took a stroll down the long corridor. The therapist stood behind him with fingertips on his shoulders and my husband walked in front of him encouraging him. He took 2 or 3 steps by himself, before losing his balance then would get up and start again. After 20 minutes we rested and bounced on the exercise ball, then we tried again. By the end of the hour (an hour!!!) he was cruising in 10 foot stretches and laughing, “eh-eh-eh!!!” as he nearly ran to Dad.
We were so thrilled, especially since we were all there together that day (holiday) to witness it and celebrate!
He does walk with his hands above his head and he doesn’t catch himself when he falls, but his balance was improving before our eyes.

I have attached a little video below of the beginning of this process, if you’d like to take a look. Hooray for Maxie!

With gratitude,
Julie, mom to nearly 19 month Max, partial T13 (+13/-2 and Klinefelter’s)

 

September 29, 2008

Today we celebrate Hannah's 8th birthday!!!
She never ceases to amaze us that she is doing so well! She is one of the kindest, fairest
children I know. She is always worried about other's feelings and will do everything in her power to make sure that everything is fair to everyone. She won't even take a doll on a trip with her because she doesn't want to hurt the other doll's feelings!

She is now in 2nd grade, takes ballet and jazz and had lots and lots of friends. She has a HUGE imagination and loves to be the "host" of anything. She loves to play Wii, loves Hannah Montana, Disney Channel and pretty much anything Disney related. I think she should be a tour guide at Walt Disney World someday. She would be perfect at it!

She is my little worrier and tells me that she doesn't want to get any older...she is quite an old soul. She loves to boss her three brothers around but when it comes down to it, she is very protective
of them. She is the most content when all of the family are together. She is my little angel!

Happy birthday Hannah Clare!

Love,
Mommy

9-2-08
On September 13th we will be having a celebration of life party for our son Daniel Miguel Gonzalez. He was diagnosed with full T13 when I was 21 weeks pregnant. We were prepared by our doctors. we had his casket picked out, our family ready to be there at the hospital with us for what little time we might have with him. They told us that his condition was severe. Tetrallogy of Fallot, bilateral cleft, and more yet to be discovered. they told us about how "children with trisomy 13, they just aren't any kind of normal, that there is nothing anyone can do for them" we were told our son would be lucky to make it full term, to breath, that I'd never feed him, that he would be virtually a vegetable. I was hugged by EVERYONE. I had so much support from every woman who knew our story. so many tears shed.

On July 11th, 2008. at 8:18am, Daniel was lifted from my womb and made the most beautiful cry I had ever heard. Full term, Cesarean, 8lbs 7.1oz, 19 inches long, breathing, reaching for his daddy's finger. he scored an 8 on his APGAR. 45 minutes later he was nursing a bottle. there were so many moments of complete bewilderment for his pediatrician. like the one when he told me my son could go home with me, that he was wrong, that maybe he might actually live a month, not the 48 hrs he had told me the day before birth. My high risk ob couldn't stay away from my recovery room. He kept bouncing in and out with the biggest grin on his face. We were the success story for him. The wonderful miracle. This doctor who lifted my son into our world had been there through everything with us. He knew our fears, hopes, and he understood the full breath of love we felt for our little baby boy. Our little baby Daniel. We gave birth to him in Billings, MT and were provided with the sweetest most comforting hospice support when we took him home to Bozeman, MT. The nurses were great, but we wanted more for our son. I demanded an echo and got a confirmation of diagnosis, and 1 1/2 hr of lecturing by the cardiologist on how our son was not worth surgery because of the statistics on t13 babies, mortality rates, severe brain deformities, etc. He told us he might not be able to handle anesthesia because of his brain, so I asked for an MRI to see if he had the possible brain malformations that made it so dangerous. We were told that they'd have to sedate him for that and he might not live so they wouldn't do it. There was a huge paradox in my mind. IF THEY WERE REFUSING TO SAVE HIS LIFE BECAUSE HE MIGHT HAVE A BRAIN PROBLEM, AND THEY WOULDN'T LOOK TO SEE IF HE ACTUALLY HAD IT, THEIR PRESUMPTIONS WERE SEALING OUR SON'S FATE.

I exhausted our medical resources there, and then my mom found this website. She told me about Josiah, a 10yr old boy with the same ailments my son has and how he has doctors who treat him. There was no question after that except HOW DO I GET THERE TO CALIFORNIA?? I got some help from a very generous organization and before we knew it we were driving across Nevada. Today my son is beautiful, healthy considering his disorder, eating, sleeping, pooping, peeing, smiling, interactive, reaches for us to pick him up, has ticklish spots, has doctors that have almost immediately set him up with specialists and tests. He is a wonderful boy and we are celebrating how lucky we are to have him. I have a few goals that if God allows will set the standard for our lovely educated doctors: my son will speak, he will eat with his mouth on his own, he will walk, he will live to help us tell his story to anyone willing to listen, he will visit Disneyland, he will go to school even if I have to bring the teaching to him, and he will never be treated like a statistic again.
Felicia

6-3-08
Lynne is 49 years old. She is the oldest living person with partial trisomy 13. She is a long term survivor.

6-3-08
Taylor is now 15 years old.

3-2-08
Hi Everybody, Kimmie participated in The Special Olympics here in Naples FL. Kimmie was entered in 2 events, the 1st was the tennis ball throw where she placed 2nd and she also did the 25 meter walk where she placed FIRST!!! We are so very proud of our girl. Cindy & Tommy Miller very proud parents of Kimmie T-13 20 years old.

1-25-08
Michael’s heart surgery went very well. He did not spend very long in the hospital! He is doing wonderful and the doctor said that his heart is working the way it should be! Praise God!  Brandy

10-2-07
Melanie is now able to pull herself up and stand. That is a huge accomplishment!! Raul Gutierrez

9-7-07
Kayla turned 16 today!!! and has had a really good day, she is not having many seizures lately and not having any other medical problems.

We are having her little party Sunday but she enjoyed a Birthday cupcake and ice cream and she loved it!!

Rebecca can now change out her VCR tapes, really she just started doing this today.

Also she is doing better at school, I think that she has decided that she likes her teacher and is becoming very attached to her. So I am so thankful for that.

Also she has mastered a counting cookie jar that you have to put a little plastic cookie in the jar and it will talk to you. I guess this goes together with her finally putting her tapes in the VCR.

I am so glad that she is able to have some independence and some confidence.

Cindy

8-1-07
Rebecca's 21st birthday is approaching!
The big day is August 3rd. Rebecca is excited, and so are we. We already took her to see the movie Ratatouille and out to eat, because she and I are traveling out-of-town in a couple of days to another family wedding (the third scheduled for this summer). We thank God for Rebecca and the blessing that she is to our family and friends!

Glenda Parkman, Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation, almost 21-years-old) and Aaron (18-years-old and preparing to enter GA
TECH), and "Grandma" to Toby (our pup)

7-28-07
Dear All,
We are excited to celebrate Rebecca's 21st birthday. - August 3rd! We thank God for Rebecca and for the blessing that she is to our family and to others! Rebecca's 22nd birthday was August 3rd. I  ordered a big "cookie cake" from The Great American Cookie Company for her to take to the regular Thursday afternoon meeting of her social and life skills group. I'm also took sodas, and the group sponsors had already planned to let the kids make hotdogs, so that worked out great! Rebecca loves pink and had picked out pink plates and cups and pink and yellow napkins. There are about 20 young people in the group, and Rebecca was so excited about taking the cookie to share. Mike and I and Aaron went out to eat with Rebecca for her birthday on Sunday (the real date of her birthday).
Glenda Parkman
Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation, 20-years-old) and Aaron (18-years-old) and "Grandma" to Toby (our pup)

5-30-07
We have worked so hard on any type of communication with Mitchell; PECS, Sign, and verbal. He catches onto signs but it takes awhile for him to catch on. Lately he has been signing a lot better and overall communicating like a superstar! Last night my husband, myself and Mitchell were just sitting around. I told Mitchell that it was time for bed pretty soon and of course he shook his head "no". Then out of the blue without prompting he looked at me and signed "book"-this is a sign that he uses very well but it is what came after it that dropped our jaws. I said-"yes we'll go read some books and then we'll go to bed". Mitchell then signed, "book-dad" Paul and I usually take turns reading books to Mitchell before bed and evidently he wanted Dad last night. We were so proud of him...even though I felt a little left out, I know dad felt very proud!
Katie - Mom to Mitchell t13 mosaic

5-22-07
Hi again everyone. I have forgotten to tell you about a milestone moment for Rebecca I have been working on different signs with her and about 4 days ago she actually started signing book. She loves for me to read certain books to her, she changes favorite books about every 2-3 weeks or so and she will bring me this book to read over and over sometimes I read the same book 15 times is a row. anyway i always ask her "Do you want mama to read more book" and I sign mama, read, more, and book. and I take her hands and do the signs too. which she loves and laughs every time I do it. Anyway she finally started doing book and at the right time too.!!!!!!!!!!!

So I think that this milestone might just put her up into the class that is a little more advanced and if it does then she can go to the school that is 1 mile away from home!!!!!!! Much better than almost 20 minutes away!!! Anyway that is my little milestone story now if only we can get potty training!!! Ha! Cindy mom to Kayla and Rebecca both partial t13

5-21-07
Dear All,
I just wanted to send a note regarding what the rest of this day holds. Rebecca's  special needs school has had a middle/high school class for the past few years, and Rebecca is to be the first graduate from their high school program into their adult training program. (The first members of the adult program came in from other schools/programs.) The school is having a graduation ceremony for Rebecca tonight, complete with cap, gown, and stole. The cap and gown are red, and the stole is black. They also had a Baccalaureate service yesterday, and she walked down the aisle to the song, "I Believe the Children Are the Future." This represents, not the culmination of working with her (because we'll continue, by God's grace helping her to "be all that she can be") but an opportunity to reflect upon, and to celebrate, how very far Rebecca has come in her almost 21 years of life. I'm so thankful to God for all that He has done in and through Rebecca's life! I am also extremely proud of and for her!
Glenda Parkman
Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation, 20-years-old) and Aaron (18-years-old and graduating from high school with honors on May 25th, Lord willing) and "Grandma" to Toby (our pup)

5-4-07
Hi Everyone :o)
Devon has a new skill :o) We’ve been doing the hand over hand routine for Devon’s bathroom routine for a long time. Although he cannot unbutton his pants and pull his zipper down, he CAN pull his pants down and sit down and scootchie back on the seat AND get back up by himself. He attempts to pull them back up…but it’s a lot harder for him. Along with his new teacher and myself…we also do hand over hand and make him flush the toilet and wash his hands. Yesterday he got up and reached for the flush handle by himself and he looked at me to see if I was watching and I told him to go ahead and flush it. HE DID IT!!! Of course he was so excited and proud of himself that he went back in the bathroom a couple minutes later and flushed it again…huge grin on his face :o) And well…a couple minutes after that (after I’d gone back to doing something in the kitchen)…he went back in and flushed it again and stood there clapping his hands and grinning :o) At this point I had to tell him to stop…that he only gets to flush the toilet when he does something in it :o) But hey…we’ll take it :o)

5-1-07
Well my Macy Mae is doing really good since her visit to hospital with pneumonia. She so funny with her cheekiness. Well just 17 days to her first birthday and I couldn't be more proud of her.  Katrina Mum to Macy Baker Full t13

4-26-07
I should take this opportunity to mention that since Devon has switched classrooms and teacher/paras… he’s doing better and his behavior at school is better. He is listening to his teacher much better Mr. Johnson just has to use a firm voice when telling him to do something. And our “behavior improvement plan” is helping too bother here and at school ~Penny
 

Zion pretty much over his sickness. Thanks to all of you great friends out there who sent up a prayer on his/our behalf. He is back to tolerating regular feedings, his fever is gone and we are trying to get him off the oxygen, but that is taking a while. He still cannot breathe well without it, but he will get there. It will just take time. ~Kristie

4-25-07
Today while waiting in the Doctors office, Natalia kept walking with her walker to the water fountain. She maneuvered the turns beautifully. She's getting very good at walking, turning and backing up her reverse K walker. Although G-tube fed, she really enjoys the water fountain, sticking her tongue out to feel the cool water on her tongue and to slurp a sip of water. She smiles, leans forward to try again and again and again! And even does a little jumping dance when she knows she's found the water fountain yet again. I think we made about 5 trips to watering hole this visit.
Another fun thing she is doing. Many of you may have tried this with your typical kids...You turn their palm face up so the under part of the forearm is showing. and then you ever so slowly run your fingers up the arm from the wrist to the elbow. Most people get a quick tickle.... well Natalia just loves this. She knows when we place her palm up -- she knows what's coming....Once we touch her arm...she gives the most heartwarming giggle, and today I noticed, after I've done it a few times... I can just hold my hand there just about ready to begin... and she anticipates what going to happen and begins giggling....it very cute.
Oh, and sharing her giggles. She's been having her own "giggle parties." On any given evening we'll be watching TV, Tonight is was American Idol...(What a great show!!! Raising funds for the needy) Anyhow, she gets herself giggling and she can have her own "giggle fest" for several minutes... Its quite a show as she rolls side to side please with herself for something...Its very funny! Eventually she's scooped up by a sibling saying "OH she's so cute" Oh how I wish I could capture all these great moments...She is so delightful. These times I cherish. ~ThereseAnn