Solutions - because I missed our "What works for us Wednsday"

I have been struggling with Tommy fitting into his small traveling highchair which we use for his tube feedings. His tummy is grown too big for the small chair tray. He needed a bigger feeding chair. We used the small chair in our living room for his 6am and 7pm feedings. Our family likes to start the day with cartoons and end the day with a movie. So our therapists had an idea of bolus feeding in his regular big highchair from our dinning room. So we wheeled it into the living room and velcro strapped a couple of bolus feed syringes (one to be used while the other is in the dishwasher). Perfection.

The other solution came from Braska Bear's mom and that was regarding care for his gtube opening. We now keep a split gauze with A&D ointment on it next to the opening. This is taped closed (but not taped to him) and soaks up all the gross stuff that gets goopey. Nice and neat.

Another feeding bag solution is to fill it for day with milk and set the dose for the amount of each feed. The pump shuts off after that dose, for Tommy it's 6 ounces. Then we just unhook and refridgerate the rest. The beautiful part of this is that the bag and connector is already primed. Sheer brilliance! This is great when you are on the road all day and can take just one bag and an icepack in a lil' cooler.

The last solution is something that we have actually enjoyed for a long time but are reposting here in case it helps another family. Our friend Shari once shared with us that we could refridgerate empty feeding bags for 24 hours rather than rinsing and repriming them every usage. This saves so much time. She is a wealth of amazing experience and knowledge.

Solutions to everyday gtube care are timesaving for us, but more importantly, they are caring support for Tommy. Creating a lifetime for each of our kids is our priority. Solutions help!

Happy Thanksgiving!

We traveled to Grandpa Lee and Grandma Linda's house for Thanksgiving. Guess who was there? Lots of our family! Aunts, uncles, Grandpa Bill and Grandma Sue... oh, we had fun!

Did you enjoy Thanksgiving day? We all have so much to be thankful for.








A few days before, we enjoyed Grandma Sue's homemade applesauce. Sans bibs. Notice I'm using a spoon! It's kinda hard, but mom and dad keep putting it in my hand.






Laim LOVED the applesauce.











We were at a neighbor's house and mommy just loved this picture of us pushing our toys together.







After our bath, mommy and dad couldn't get us into our pj's fast enough. Liam and I grabbed our small push trucks and off we went thru the house. Drooling while making vvvvvvrrrrrooom sounds.

Beauty

I want to share an inspirational family. After having a sweet little girl with Ds, this family went on to recently adopt two precious girls from the Ukraine. This posting from their website is just so beautiful I wanted to share with you:

http://findinghiddentreasures.blogspot.com/2008/11/don-you-think-my-new-sisters-are-pretty.html

Need ideas for G-Tube help

Tommy is growing. Which is such a blessing. But, he is growing out of his 3-ring bath chair and his portable highchair that we do g-tube feedings in. Heavy sigh. His tummy, specifically his G tube is rubbing against both now. He cannot sit up very well in a slippery bathtub and really needs some type of assistance. And I can no longer hold him still on my lap for his 6 am and 7pm tummy feedings. He really needs a larger feeding chair.

So, any ideas from out there? Do you have a 30 pound baby like mine? How do you bathe your baby with a Gtube, especially those of you who also have Down syndrome. Do you use a chair in the tub or do they just sit and play in the tub without much assistance? I'm sure that soon enough he will be fine in the bathtub without much assistance, but right now he falls over and slips under the water sometimes. I wish they made a super large 3 ring bathtub chair, that would be perfect for Tommy! And how do you manage gtube feedings? Do you use a highchair? A bumbo? Tommy needs a chair of some sort that doesn't rub against his tubing.

Help me! Please. Last time I recruited help was for my poor aching back after toting Tommy all over the pumpkin patch sans carrier or stroller. And the solution was sheer brilliance. My friend Kati put me in touch with an Ergo Baby Carrier. Ahhhh. I LOVE IT. And so does Tommy. You can have your baby in front, or on your back, or even on your hip. It's wonderful. And it places his weight on my hips. And holds up to 40ish pounds of baby love. So, tell me your suggestions for a bath chair and a feeding chair for my sweet baby Tommy.

Much better

Tommy is feeling much better. His gtube area looks normal again. And this afternoon he took four steps unassisted and then pivoted on his left leg doing a 180 degree turn. Look out! He might be walking before '09.

I'm feeling better too. My sore throat from strep is gone. I almost have my energy level back.

I'm really excited to meniton that I participated, with many other people, in a Community Meeting last Friday. We discussed the need to design improvements to services for kids with special healthcare needs/developmental concerns. Over 100 people attended. The most flipcharts I have ever seen in one room. Once a summary of the meeting is ready, I'll place a link to it here. It sounds like there will be more conversations where these leaders hope to involve more families.

And lastly, the twins turn two years old on December 12th and do you think I have anything planned? Nope. Need to make some fun plans for that celebration.

Take care everybody and have a good week.

Greetings from our in home medical ward

First thing, Tommy's lab results for his gtube site came back as staph. Yuck. So we added nystatin cream around the site three times a day. We elimated one of the antibiotics (because it wouldn't have worked for staph) and kept the cepha antibiotic. Plus, the dr called in a prescription for an oral antifungal (just to eliminate anything that might be growing) and the lovely prescription came in the form of two HUGE oral pills. What? A very tired daddy had picked them up from the pharmacy and didn't even look at the prescription. I laughed so hard when I saw it, okay, at what point do you think that a toddler with an infected GTUBE would be taking an oral medication (a huge one at that). We talked to the pharmacist who approved us to crush the pill (some you cannot do this) and put it in water and down his gtube. Whew! He is well medicated and lookin' great now.

But now mommy is sick. This is day three of strep throat for mommy. Gross. Yesterday I mustered the strength to drive to the dr and all she could say while looking in my throat was "horrible, sandi, just horrible". Tonight I will officially be non contagious. After 24 hours on antibiotics you aren't contagious anymore. I hope to feel better too. It hurts so bad. Blah! We canceled all therapies for the week. Need rest.

He's feeling better

Tommy is feeling much better today. The two antibiotics must be doing the trick. The infection didn't grow beyond the ink outline that the drs sketched on his belly.

Tommorow the lab results should be back saying what he has. Thank you RK for the suggestions of ways to prevent this from happening again. I'm going to do all of them!

Not feeling well

Tommy's g-tube area is infected. The infection has grown quickly. Thanks to Miss Sherri for a phone call today. It took three doctors this afternoon to decide not to admit him to the hospital. Heavy sigh. This time he is on two types of antibiotics at once. They took a swab from his g-tube area and the results will be back tomorrow from the lab and hopefully we can get down to just one antibiotic.

Words that don't go well together.... Hirschsprung's Diseasse and antibiotics. This will be a poopy weekend for sure.

But as long as Tommy starts to recover and feel better we will be happy. If anyone has ideas on keeping a g-tube site a little cleaner let me know. We have had the Mickey since Oct 20th and I struggle with it's daily care. Ideas?

What works for us Wednesday

I had so many ideas for today's "What works for us" but I finally decided to write about something that happens daily for us and that is good childcare. It continues to be a place that tugs my heart, I really want to be the one that cares for our four kids. But, on the days that both Colin and I work, we have been blessed by the most incredible and fantastic childcare, Promise. They know how to care for the boys more than any of our family members. They love our boys and are amazing in their thoughtfulness and communication. Here is a note from this last week for Tommy:

"Tommy had a wonderful week at Promise. He is getting more adventurous with his movement and is trying very hard everyday to take steps. We are still working with him to make his core stronger as well as making sure he has toys available that he can lean on and push around the room. Our Fall Festival went great. Thanks for the cookie donation they were delicious. Both of your boys got to help Miss Sherri make homemade applesauce which we ate for lunch the very same day! As you have noticed we have been spending less and less time outside which means that we are working twice as hard to keep the kids entertained. Be prepared for more art projects and cleaner clothes!"

Thanks to all of our great teachers at Promise! You are what works for us. We love you guys.

Feeling a little better

After developmental therapy today, mom said some vitamin D would be good for me. She gave me a nebulizer treatment and then outside we went. I think she was right. It's either that, or the vitamin 'fun'. Liam and I walked our cars to the end of our driveway and back at least three times (mom lost count). For Liam, that's no big deal. But for me it's really good.

Super twin powers

Something apparent lately to me during therapies is how much the boys problem solve together. One holds the bucket so the other can take things out; one arranges the couch cushion off the couch so the other can climb up, if one is sad there is always a hand from the other rubbing his head, etc.

Most notably, they talk some type of jibber-jabber (twin speak) and seem to be happy with the meaning of it. Their smiles seem to mean they understand.

They don't use sign language to talk to each other, rather their sign language is only directed to Mom and Dad or Hannah and Nate. But through their wonderful teachers at Promise and our speech therapist, we will soon get the boys using words. Super twin powers will continue, but hopefully so will "words" and more signs.

Congestion

After a two month absence from any pulmonary care, Tommy is back on his albeuterol and pulmicort treatments every 4 hours. His congestion from a common cold caused at 1am nebulizer treatment last night. Poor guy just gets so wheezy from a sniffle.

"What works for us" Wednesday

Prenatal (and postnatal) diagnosis is a very tender subject for families. I'm not posting about pro-life or pro-choice so don't get all anxious on me. But I am posting about information. Data and resources is "What works for us". We received a prenatal diagnosis and we did read and learn alot after that 20th week diagnosis.

Recently Congress passed legislation to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. http://www.ndss.org/images/stories/NDSSresources/pdfs/kb_press_release.doc

Tommy and Liam were born 12/12/2006, so I wanted to post data here about what happened in Washington state that year. During 2006 in the State of Washington, there were 86,845 babies born. Only 77 of those babies have a diagnosis of Down syndrome. That is only 9/10ths of 1% ( .0008866) were born with Ds.

Many, many more than that were prenataly diagnosed. A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated.

Interesting other facts for 2006 (State of Washington) are the number of babies born with Hirschsprung Disease, 9. Less than 1/10th of 1% (.0001036) were born with a diagnosis of HD. Although that is not a prenatal diagnosis, I thought it interesting enough to post here because I would love to learn from other HD families in Wa State!

Extremely interesting was the fact that in 2006 there were only two births in all of Washington State that had one or both babies born with Ds. Both were in Whatcom County. One is us (of course), and the other set are the most beautiful (and active) girls you will *ever* meet.

I was never aware of how many families in the US (and abroad) are welcoming kids with Ds or other developmental diagnosis. Here is Reece's Rainbow website again http://www.reecesrainbow.com/angeltree2008.htm. There are so many families in the United States welcoming adoption *and foster care* of children with Down syndrome and any developmental disorder.

A few inspiring folks (both are must reads):
http://www.hidden-worlds.com/judithscott/
http://www.karengaffneyfoundation.com

It's been almost two years since the twins were born. "What works for us" during the prenatal diagnosis was information (and lots of faith).

Liam's sedated Baer hearing test

Daddy and Liam are at Children's right now figuring out with the nursing staff 'if' Liam is healthy enough for the Baer testing and sedation. We will keep you posted! Mommy and I are still in Bellingham today, it's hard not to be with them. Please keep Liam in your prayers this morning for a safe test and conclusive results in regards to what levels he can hear.

**Update, 9:45 Daddy called and Liam is safely sedated and the test is being done. Praise God! Finally, we will be able to understand what little brother can hear and rule out hearing loss (or rule in).

According to daddy, the nurse listened to Liam's chest, wiped his nose and decided that there was no 'junk' that he could aspirate on while sedated.

He is asleep now, hooked up to an oxygen saturation reader and a blood pressure cuff. The nurse will stay with him throughout the BAER test.

The test should take 45 mins to 1 hour. The results are immediate.

Basically, the way daddy explained it, the dr sends tones through his ears and the probes that are attached to his head give readouts of when that sound reaches his brain.

Thank you for all the prayers! A little 28 pound boy who doesn't talk yet... is hearing your prayers.

**Update 12:30 Liam is awake, eating and drinking and smiling according to a very relieved daddy. The test results show that he has wonderful hearing levels, all within normal ranges. Which, surprises me, but I am so thankful. He can hear at all the appropriate ranges!

Thanks to everyone for thinking of Liam today. It means alot. We have speech therapy for Tommy at 3pm and am anxious to tell the therapist (who also sees Liam) the results.

Reece's Rainbow Angel Tree Project

The Angel Tree is an amazingly wonderful Christmas gift idea. I get little teary eyed looking at all their sweet faces. What a terrific gift idea!