Friday, January 29
Daddy left for a two night snowmobiling trip. Hannah is off for a two night cheerleading competition. Liam is having his first ever sleep over at someone's house.... aunt Debbie and gang! So, it's just Nate and Tommy and I tonight. I made this and it was delicious:
Tommy still has abit of instability when climbing stairs or trying with great efforts to move over toys and such. We have been playing in our garage to stay warmer but still be able to get out of the house, and I noticed that Tommy was grabbing gross things for support while he was motoring about. So, I'm organizing our garage abit. Which will continue for months, because there is alot of 'stuff', but it's a start. And Tommy will be better able to get around and not have so many obstacles to touch and then put into his mouth (his hands go to his mouth lately).
Soon, we are going to throw out our bird seed playbin and make this (adorable ideas on this site):
Pictures coming soon!
Thursday, January 28
Called the bus driver and said school's off today, and luckily tomorrow is a workday for the school district. So we will have a couple of days to recover. Tommy seems healthy right now, so that is good!
Nate has strep throat and has been miserable, today is day three on antibiotics. I think we will be in quarantine until Sunday. Lots of movies, juice and rest for all.
Today is a big day for two of our friends who are both having the same surgery at Seattle Children's. Angelina and Max are both getting there tonsils and adenoids removed. They both need prayers for safe anesthesia and a smooth road to recovery. Hang in there friends!
Wednesday, January 27
Lots going on this week. Last night at women's group we did a small outreach project for the homeless in our area and our bible study was on being a neighbor. There were so many women there to share a yummy taco dinner, bible study and fellowship. It was great for me to meet more people. On the way there I felt rushed because Hannah and I had squeezed in a workout at the gym. I prayed that I could feel quiet and focused once I got there on listening to the message and meeting others, just find a way to be still and hear Him. Once I sat down to eat my yummy dinner the woman next to me thought it might be nice if I spoke at an upcoming women's group on facts about Down syndrome and what it is honestly like being a parent. AND she is starting a girls high school program at the church and she asked me to speak in a way to soften their hearts as they someday think about being parents and might have a child with Ds or other developmental disability. Wow. I'm so glad I was listening! God places people in path at every turn. I welcome the opportunity to share our story and help others learn.
Sunday, January 24
Wednesday, January 20
Whew! It's been a busy few days and before I tell you how the lung visit went to Children's yesterday, I've got to say a HUGE thank you to Grandma Dorothy for watching the toddlers for three nights while Colin and I got away. Thank you Dorothy!!
Since Tommy's sleep apnea is severe, we were referred to a Pulmonologist at Children's in Seattle. We have never seen a lung doctor before, so the appt was almost two hours long with just questions and answers and waiting! Thanks to Grandma Sue for going with us and remembering all the answers :)
The bummer of the appt was the cd with all his xrays pre/during/post pneumonias that I hand delivered from Bellingham to Seattle in December is missing from his file and to our understanding not read yet. And then we *almost* went home with an oxymeter, but since Tommy's tonsil/adenoids surgery is on 2/25, we are going to stay on Pulmicort nebulizer 2xday and use the albuterol when he is sick, and pray that the T&A surgery makes a difference. The lung doc said that Tommy has a 50% chance of improving after the surgery. We will meet with the lung doc again in March after Tommy has mended and see if there is improvement. If none, then we will go home with the oxymeter and some other changes will be made while he sleeps. We are going to keep our next sleep study which is in April.
The doc did suggest that Tommy stays out of preschool for a week prior to the surgery to stay healthy. We all want to keep that surgery date and get this done to help him. December was our last month at Promise, which was a really hard transition, geez the boys and us LOVED that place. Now, the boys go to preschool with the school district and we have a wonderful person come into our home to take care of the boys for the afternoon hours. This was suggested by the immunologist because Tommy is compromised. It was brought up again by the lung doc yesterday that Mr Tommy's situation is "thin ice" in terms of getting a cold or other illness. He is a quick crasher and we are all taking procautions to keep him as healthy as we can.
The lung doc also suggested that the cpap mask be put on Tommy without the airflow until he just gets used to the mask. Then after a few nights of training with just the mask, we will attach the hose and start the airflow and see how that is tolerated. Right now, you put that mask on him and he becomes Mike Tyson with the arms, REALLY nice defensive moves.
So, that's the lung appointment. Tommy did great as usual, he is a champ and had big smiles.
Sunday, January 10
The Oley foundation was created to help people of all ages with their tube feedings and IV lead fuller and richer lives. How great is that? Their site is HUGE. I found it when Tommy had a NG tube fr 10 months.... little did I know then we would have a Gtube.
http://www.oley.org/travelpack.html Here is a page on their website on pre formatted travel and hospital admissions suggested letters and physician signatures. Having these statements signed by a physician will hopefully help with passing security reviews. And simpler for some people that are unfamiliar to read.
There is also a page on the Oley website for items that families don't need anymore, an exchange, if you are between insurances or find that using more of an item works for your family member (but insurance only covers a few of it per month).... this might be helpful. http://www.oley.org/tubetalks.html
Now... off to sunday service after Tommy's G-tube feeding ;)
Saturday, January 9
I made this for lunch:
I had wanted to make it anyway sometime in the crockpot, but I had so many odds and ends in the fridge that it was easy and quick to throw together. The little guys wanted to play outside (for hours) and it was nice that I knew lunch would be hot and ready before naps. Yes, I went outside in my jammies to supervise play :) Try not to drive by my house on the weekends, it ain't pretty. We all loved the results of this recipe. It's delicious!
On the docket for this weekend is making a batch of laundry soap. I'm going to try to make it since it's much more affordable and so many of my friends have had success. Heading to the gym both days. And just in general cleaning up the house. Going to visit our nephew Owen tomorrow for his birthday and shop for daddy's birthday on Tuesday.
Good news, Tommy was approved for Synagis shots by all of our insurances, so it's being overnight'd on Monday to our pediatrician. Prayerful that his immunity will kick in before 2/25 surgery for adenoids/tonsils. It's not the best time to be in the hospital for an elective surgery with all the flu and rsv floating around.
Hope everyone is having a great weekend!
Tuesday, January 5
1. My weight. Joined the Y and am very happy to say that I'm 'slightly' enjoying the workouts. Remember, I'm non athletic, three pregancies and the twin pregnancy killed my hips, I've got arthritis in my spine, and 40 pounds to lose. Hmpf. I know, eat less and excercise more... I like one of those options not the other :)
2. Tommy's health. Current struggle is to get him Synagis. This decision was started in September. By the time all three physicians (Immunology, Pulmonology, Pediatrician) wrote letters in was end of October. Then the primary insurance took until November to review and approve. Then there is the decision on ordering the vaccine which was well orchestrated by our pediatrician office (5 shots I think and each is approximately $2,500). Unfortunately there is the decision by the vaccine pharmacy (Caremark) to only use the secondary insurance because that is a higher deductible and 'easier' for them to use. Which resulted in a call yesterday from Caremark to forewarn us the copay is $371 PER shot. Times 5. Ugh? Well, then you need to talk to his third form of insurance which is WA state medicaid. Which will take days for prior approval. Struggle. By the time this all gets worked out it will be summer and no need for the RSV vaccine. I wonder if that is the strategy from insurance companies. Delay.
3. Spending more time with my hubby. Need to schedule date nights and prearrange the sitter. Marriage is a work in progress. Need more progress :)
4. Prioritizing volunteer time. Dso member, Strengthening services to kids with special healthcare needs (future search) member of two comittees now, PTSA treasurer, P2P board member. My two year term with PTSA is up in June, once that is done I think I'm also going to eliminate my time on one of the Future search comittees. My love is the P2P, DsO and planning for the 'place' of a future clinic for kids with special needs.
5. Farm life. Honestly it's work. Need to focus this spring on painting the chicken coop and goat barn all red. Then the paint we have had for the house & shop for two years needs to go on our house! Then rework the front flower bed and garden so that there is landscape fabric and NO WEEDS (or lots less weeds). Which will reduce my time in those to spend it on acutally enjoying gardening for the meditative opportunity (not swearing at the weeds). Fencing projects need to be finished, it doesn't look 'pretty' here right now.
6. Family times for teens to toddlers, plan for bowling, swimming, hit the slopes of Baker, head to birch bay, you know the fun stuff. But it's a tad bit of a struggle planning stuff for six to enjoy.
7. Money. Oh, the struggles. Save and spend and tithe. How to make all three happen and grow a family of six lovingly.
Monday, January 4
Sunday, January 3
We felt much better after we crawled out! And were back on the trail in no time flat.
The next day Hannah and I stayed back at the hotel to 'relax'. I worked out in the hotel gym and then we figured out the trolley and bus system in wenatchee to get over to their mall for some window shopping and lunch! Hot tub and swimming pool plus yummy pizza filled the rest of the day once all the families returned from snowmobiling. Nate and Colin had lots of fun that day.
All four of us enjoyed our wintery get away over New Year's. But we were glad to get back and see our little guys!
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