Grace Unhinged --
A mom's daily ramblings of raising a daughter and three sons. Young adults, twin boys, a farm with goats to chickens, gardening and quilting, work and my sweet husband especially. Taking a day at a time and by the grace of God, we make it thru.
Mommy had the perfect birthday, a day spent with her four kiddos. After Hannah and Nate were off to school, me and Liam went to our first play group! All of our friends were there and mommy was sooooo happy to talk to their mommas again. Wow, those kids can do some cool things like crawling and eating crackers!
Daddy brought home mommy's favorite mexican food for dinner and some pretty funny birthday cards. Mommy enjoyed taking more pictures of me (really, after a while mom it gets old, she should post my 'unhappy' pictures). Liam was sleeping so finally a post of just me!
As you know, our son Tommy has Down Syndrome. He is a very happy little guy that has triumphed against all the special health care issues that have come his way. His imact within our family has been enormously positive. Tommy reminds us everyday of what is important in life! Lots of smiles, cuddles and a few tickles.
As some of you might know already, Down syndrome is a chromosomal disorder that affects one of every 800 live births. It is one of the leading clinical causes of intellectual disability in the world. Quality educational programs, along with a stimulating home environment and good medical care, enable individuals with Down syndrome to become contributing members of their families and communities. We are committed to raising awareness about Down syndrome as well as educating folks that a complete and happy life is possible for people with disabilities.
Many of you have asked during the past nine months about a way to help. Since we have been blessed with having all of Tommy’s needs met, we would LOVE to ask your help supporting the local Down Syndrome Outreach, thru the “Buddy Walk”. Down Syndrome Outreach is a nonprofit and very worthy of your support. We access many services and programs thru Down Syndrome Outreach.
The Buddy Walk promotes awareness and inclusion for people with Down Syndrome, as well as to raise money to support education, research and advocacy. Needless to say, it promotes a cause that is close to our hearts.
Please consider sponsoring Tommy for the Buddy Walk by making a donation. His team name is "Tommy's Tigers". Your donation will help him and many other individuals and families affected by Down syndrome. Email us at firstname.lastname@example.org if you would like more donation information mailed to you. $5 or $10 will help. For those that sponsor $25 you will receive a tax deductible receipt from the Down Syndrome Outreach.
Come walk with us! The local Buddy Walk will take place in Maritime Heritage Park on 10/6/07. We want you to walk with us. Registration will begin at 11:00 a.m. with the walk kick-off at 12 noon. The Buddy Walk is about 1.25 miles long (strollers, wagons and dogs are permitted) and there will be activities planned for the kids (face painting, bubble fun, balloon typing and dancing), as well as Guest Speakers and other festivities.
Mommy thickened my formula with THICKEN IT. This is something that one of my feeding therapist suggested. The therapist said to thicken the formula to between a honey and a pudding consistancy. However, mommy turned it into something that resembled whipping cream. The cup that I have been learning from is called a nosey. Well, the nosey didn't really help pour the thick whipping cream, but I wanted to show mommy how interested I was in that nosey cup so I opened my mouth wide like a birdy. Soon the whipping cream was all over my mouth, the nosey, mommy's fingers, my cheeks and chin... mmmmm. I LIKED IT.
Tommy had his preop today for his upcoming "3 in one" surgery. Tommy saw the ENT that will be inserting his ear tubes. Plus, he met an anesthesiologist that reviewed his latest echo and was pleased to announce all looked good with Tommy so the surgery can be scheduled! Not only will Tommy get ear tubes (and hopefully can hear at less than 90 decibels), he will have a hyrnia repair and a Peg (future Gtube). Daddy enjoyed a fun filled day of doctors appts at Children's Hospital. Thank you Daddy! And thank you Grandma Sue for helping on this long appt day.
The BEST part of the visit was seeing Chelsey Ebert! Tommy got to cuddle with Chelsey :) She is an incredible girl fighting cancer and we think about her constantly! Smooches heading Chelsey's way from Tommy.
Yep. The feeding therapist showed me how to drink from a cup! And I like it. Well, an ounce or two and it needs to be a little thickened. And occupational therapy was fun too, E. showed mom how to prop me up in almost a crawling position. I loved looking around from a different position.
Yesterday was a feeding therapy appt for Tommy. We learned that Tommy really enjoyed mouthing soft foam shapes. We had been giving him light weight rattles and toys which he wasn't fond of mouthing. So, mommy went to the store to find soft foam shapes! We also learned that Tommy swallows more food if we place the spoon to the left side of his mouth. Slow progress this week!
Babies and mommy are home today snuggled up with a cold/cough. Yukky!
I wanted to show everyone (especially new parents that have children with special health care needs) what a typical day going to Children's Hospital looks like. Here I am, looking so cute!
Nate entertained me while we left Ferndale. Mommy is so happy since we qualified for "Medicaid Medical" this means our gas (and future Ronald McDonald overnight stays) is paid now through DSHS. So we left Ferndale at 8:30 am and the first stop was the gas station!
When we finally arrived at Children's we hurried to get to the Research Center for an 11:30 appt. See, I volunteer for a few studies in hopes that other kids will benefit from the research findings. This time the research folks needed a blood draw. But after 3 pokes, mommy and I said no thank you. Next time I come for another visit they will try again!
Next was my echocardiogram in the Heart Center at 1pm. A couple of things were noted that were typical results after an AV canal defect repair. Next was my appt with the cardiologist at 2pm. All was good!
Daddy and Mommy had lunch together at 3, the cafeteria at Children's has a yummy salad bar and sandwiches and cookies.
Then a 4:15 with general surgery as a follow up to my Hirschsprung Disease. Dr Goldin looked me over and gave me an A+ (and a prescription for miralax and cenna to help keep my intestines movin along). The dietician came in for a visit to discuss calories and I can now eat every 4 hours rather than 3 hours. My feeding therapists will be happy to know I will feel a bit more hungry now! Dr Goldin is going to do another surgery for me -> G tube, a hirnea repair and ear tubes! Whew. I'm tired just thinking about it.
Grandma and Grandpa enjoyed helping out during this part of our day because Daddy left for the Seahawks game. Mommy was so happy to have the extra hands. Grandma is good at remembering all the doctor conversations!
Our very favorite nurse practicioner came in to show mommy how to potentially care for a Gtube. The actual surgery will be in late September hopefully. This visit was extra special because I was Lonni's last patient she will ever see in the surgery dept! She has helped me alot with my repair and a bout of colitis. She is going to join a new prenatal diagnosis dept at Children's. We hope to see her again in the hallways!
We left Children's at 6:30pm and finally got back to Bellingham at 9:30pm. Whew! A total of 13 hours away from home. I was tired! Glad mom was driving because I fell asleep.