Happy Birthday, Tim

We all have picked up a slight cold combined with allergies this week. Some of us took COVID tests, and they were negative. We are about to leave on a grand adventure. I don't want to say where or when we are leaving, but...it involves suitcases so I am excited. I love traveling!

We had a low key birthday for Tim this week. He requested chocolate cake with cream cheese frosting and homemade cheese burgers with all the fixings. He also wanted a board game night. We played his new board game, King of New York. It was a nice and peaceful evening. Such a nice change from the crazy of the first two months of this year. We are so glad Tim pulled through all of the complications his heart went through this winter. He is such a blessing to our family!

Blessings, Dawn

Timothy Update

The device in the side of Tim's neck is an external temporary pacemaker.

After 10 long days and three surgeries, Tim is home. We had an excellent experience at Duke. The nurses and staff were just wonderful. Considering how short staffed they were, we still received the most caring and professional support. There were many days when the goal was just to keep Tim healthy and wait until the lead extraction surgery could be planned and scheduled. David or I stayed with Tim 24 hours a day in the hospital for the entire stay.

Dear Husband came and relieved me for two days so I could go home and tend the home fires. It is an 8 hour round trip between Duke hospital and home, so I only left the hospital once. They two of them had lots of fun together watching horror films on the science fiction channel. 

Tim was a model patient and he was always polite and cooperative with the nurses. Even when he was coming out of anesthesia, his manners shined through. He had the nurses completely charmed. If only there would have been an ice cream machine on the unit, he would have been spoiled by those nurses. However, it was a cardiac unit and all the food was rather healthy. The nurses were also shocked that he ordered broccoli (his favorite vegetable) with almost every meal and actually ate it.

The final surgery was one of the most complicated of Tim's life. The doctor listed off a rather long list of concerns, but he also stated that they had lots of planning time and his team was hand picked. They took every precaution and had a host of backup plans. One of those plans was to have two teams in the operating room for his final surgery. Team A did the laser extraction and placement of the new leads. Team B (a vascular cardiac team) was scrubbed in and on standby in the operating room in case there were complications and they needed to do open heart surgery. As Dr. Hegland (Team A surgeon) said, "Hopefully, we will keep Team B standing around being bored". Fortunately, Team B did end up just standing around in the operating room. The surgery took almost 6 hours (two hours more than expected), but that was simply because they had to go very slowly and use multiple tools to extract the deteriorating leads. They also had to go in from multiple sites so he has a new host of battle scars. We are so grateful and blessed that everything went so well. They never could get his heart to show successful beats over 30 beats per minute (under the pacemaker), so he is once again fully pacemaker dependent. He has spent much of his life in this condition, but in recent years had a higher heart rate so that he wouldn't be in critical condition if his pacemaker failed. Unfortunately, that is not currently the case. They do not know if his heart will recover over time and start having more successful beats as it did after past surgeries. It could be years before he has heart function improvement. It is amazing and awe inspiring what they can do these days.

We even were released in time to beat a huge snow storm home. This is what our back yard looked like just hours after we arrived home and it kept snowing for about 7 more hours. 

Blessings, Dawn

Week 31 ~ What a week!

We are hanging in there and riding the wave of life as best we can right now. If you read my last post, Homeschooling Through a Crisis, you know that Goldilocks was admitted to a psychiatric hospital this week. I have spent 5 to 7 hours on the phone every day trying to get Goldilocks help, find out about placements and funding. I am really emotionally exhausted, so this will be a short post.

Monday ~ Our son Timothy turned 24 on Monday. How is that even possible? He never wants very much and isn't demanding in the "stuff" department. He wanted a calm,  at-home family party. He took a German chocolate cake to his day program (for brain injured adults) and then we had Pizza Hut pizza and deviled food cake for dinner at home. We hadn't had Pizza Hut in years. We gave Tom Sawyer all kinds of supplements to counteract the wheat and corn, but it still wrecked him for a few days. Timothy's favorite presents were a subscription to Netflix and a box filled with 24 snacks! He also loved getting the complete set of Indiana Jones movies.

Tuesday ~ Tuesday started off normal. I went off to meet with Goldilocks' therapist. However, her mental health team ended up deciding that Goldilocks was so unstable that she needed to be moved to a psychiatric hospital. The process to get into the hospital is by way of the ER. It was a long and sometimes frightening 7 hour process. I am so thankful that Goldilocks' respite care provider stayed with us and helped smooth the way. She is great at the mental health side of things and I am great at the medical side of things, so we made a good supportive team for Goldilocks. Giving your child to a facility like that and watching the big locked metal doors clang shut behind her knocks the wind right out of you!!

Wednesday to Friday ~ The rest of the week was a blur of hours and hours and hours of phone calls. I have visited Goldilocks once and will be allowed another visit later today. She is allowed a 5 to 10 minute phone call each day, depending on what level of privileges she has earned. I can call the nurse to check on her whenever I want, but communication with her hospital social worker, doctor and therapist has been slow and scattered.

Homeschooling...What's That?! ~ We have limped along and done about a half of a week's worth of school this week. We finished Alice's Adventures in Wonderland and started Dead End, which our librarian assures us will keep us in stitches of laughter. We managed math every day and read a wonderful book called The Journey that Saved Curious George: The True Wartime Escape of Margret and H.A. Rey. Little Red Riding Hood wrote several papers about her favorite holiday (Easter) and finished a workbook. Tom Sawyer read three short chapter books this week. Grandma came over and helped the kids get through about a dozen Language Arts workbook pages and we managed two spelling lessons. We also watched South Pacific. Lastly, Little Red Riding Hood made several Disney princess rubber band figurines (art).

Accepting Help And Counting Blessings ~ I am thankful for the homeschooling and babysitting help my Mother gave me this week. I also reached out and asked my adoption support group for a few freezer meals. We received the first one last night and we are grateful for the kindness. According to some of our team, this will be my life for the next 3 to 5 weeks -- hours of phone calls and transitions
 -- so the meals will be a great help. I am grateful that we are being heard by the professionals and that the doors are opening. I also appreciate all of my blogging friends for their kind words and prayers. I am grateful for my side kick, Boomer. He recognizes that my stress level is very high and has sat at attention next to me for days to protect me. He even fell asleep sitting at attention next to me a few times! What a loyal dog. We are so blessed!

Blessings, Dawn

Week 14 ~ Our Week in Numbers and Triumphs

I could tell you that this was one of those weeks when life seemed like too much or that this was a week when raising so many special needs children left me overwhelmed and a bit heartbroken. There were those moments in this week. For the sake of keeping it real, yes, some days are really long and frustrating. Some days I spend too much time worrying that I am not doing enough or the right things to help my kids. Sometimes I even feel sorry for myself that nothing I am doing fixes a child! However, I like to think positively and remember my many blessings and triumphs. Our family is very blessed and we are not walking this path alone. A prayer my Mother taught me when I was very young comes to mind.

God is with me and

 only good shall come to me.

Also the Serenity Prayer is encouraging.

God grant me the serenity

to accept the things I cannot change; 

courage to change the things I can; 

and wisdom to know the difference.

Here is my week (Sunday - Saturday) in numbers...

• 596 miles driven ... Thankfully, all safely driven with a well running Honda Odyssey.
• $262 spent on food ... Thankfully, the majority of that food I felt good about putting into my kids' stomachs.
• 24 Advent books organized and wrapped, ready for December 1 ... I am thankful that the kids so enjoy this family tradition. (I will be listing our Christmas books in a post soon.)
• 9 hours spent watching my kids dance ... I am so thankful for the joy that dance brings my kids. We love our dance studio and I am looking forward to seeing Tom Sawyer and Little Red Riding Hood in the Nutcracker for the fourth season soon.
• 7 doctor and therapy appointments ... Thankfully, everyone is progressing; Timothy's heart and pacemaker are functioning well; and we have lots of support, plus health insurance.
• 6 hours of wonderful educational play with WeDo Robotics ... I am so grateful we were able to afford Lego WeDo Robotics for Tom Sawyer. The joy when he received this addition to his curriculum was boundless.

• 5 full days of homeschool lessons ... I am thankful for Grandma homeschooling the children one at a time in the car on our 8 hour round trip to Duke Medical Center.
• 4 math lessons achieved ... I love Teaching Textbooks.
• 1 special project completed ... For a year now, I have wanted to make memory rocks for a few veterans in our family. This Veterans Day we made one for my husband, Father-in-law and Great Uncle who fought in World War II. We placed them in the Warriors Cairn at the Veterans Hospital. My feelings are complicated about this subject. I hate war and feel that we get ourselves into so many unnecessary conflicts. I also think we do not do nearly enough to solve our world issues peacefully. However, I love my husband and relatives and respect that they were men willing to put themselves out there to protect us and others. 
• 1 overnight at Ronald McDonald House ... I am thankful that RMH continues to host our family, even though Tim is now an adult. Since he must be followed by a particular pediatric cardiologist and we have so many young children, we fortunately fall into a nice little loophole for a few more years.

I am joining ~ 

Blessings, Dawn

Medical Update on the Kids

It seems like it is time to update here about the kids medical issues. If for no other reason, then so it all can stop swishing around in my head. There is lots of new information right now and I need to start compartmentalizing it.

*All of the pictures in this post are from blueberry picking recently. After blueberry picking, the kids enjoyed a very cold splash in a mountain stream.

Tim 23 ~ Tim has been an irritable person most of his life. However, in the past few years he has struggled more and more with irritability and frustrations over daily activities. Every little speed bump of life is like hitting a mountainside to him. We decided to leave conventional medicine (that was giving us almost no help) and look into alternative medicines. We had him tested for cortisone levels and tests to see how his adrenals were doing. The test results are back and indeed his cortisone levels are very high and his adrenals are not doing well at all. Testing of his neurotransmitters revealed that two of them are very low. These are serotonin and GABA, which help with happiness and a feeling of well being. The doctor started him on some new supplements, but she told us upfront that it might not be enough, since his brain is so badly injured. So far, he is complaining of having lots of trouble waking up in the morning. However, he has been functioning better and having more small pleasant moments than before. We are hopeful that this new protocol will help him over the coming month. We are also trying to stimulate more alpha waves in his brain and decrease the amount of his beta brainwaves. One way to accomplish this is by using classical music. We are playing lots of Bach around here right now. So far, I am seeing a little bit of improvement in mood while the music is on, but as soon as the music stops, he is right back to not feeling well. We plan to purchase Wild Divine soon. Our psychologist has been suggesting it for years. Now we are going to take the leap. It should be useful to multiple people in our home.

We are also exploring changing Tim's diet a bit. He has a latex allergy and we found out that there are several foods that cross-react with latex due to having the same or similar latex proteins. One such food is bananas. He has been allergic to them for years. Now that I see the list of what other foods he might react to, I am realizing that he already avoids some of them because they make him feel bad. It seems like this could be contributing to his mood as well.

Furthermore, we needed to get him a psychological evaluation to keep him at the brain injury program he is now attending four days a week. The results are not back yet, but the psychologist wanted to tell us about his IQ. The verbal part of an IQ is very noticeable when people interact to people because it includes vocabulary, sentence structure, comprehension and carrying on a conversation. Tim has a very high verbal IQ in the superior range. However, the rest of the scores that make up his IQ are in the low average or even below. With such a high verbal intelligence, Tim is able to speak with complex vocabulary and comprehend what others are saying even in a complicated conversation. This explains why there are people (such as the teacher he was having trouble with recently) who think there is nothing wrong with him and accuse him of not applying himself. It takes longer to realize out that he processes information slowly, has a terrible working memory, and has very poor math skills. All of this combines to make it difficult for him to navigate his world, to manage time or even remember his phone number. So when the experts average out his IQ it really cannot reflect Tim's abilities at all. In fact, the doctor said that Tim falls into a very narrow category where the IQ test is useless. In some ways, this is a relief to know. However, it reinforces why he is so frustrated and overwhelmed with life.  Lots of work to still do here with my oldest. I am hopeful that we are on the right path now.

Goldilocks (12) ~ Where to begin...Goldilocks continues to struggle with behavior. She is always creating chaos but complains to anyone that will listen about how her family isn't calm enough and that she hates chaos. When she is in respite care, however, our home is amazingly quiet and calm. Some of the experts think she is exhibiting RAD behaviors (which she has a diagnosis of) and others think her PTSD is being triggered by having to live with her birth brother Tom Sawyer (children who were abused in their birth home and then adopted together often have lots of sibling adoption issues). An additional possibility is that she is showing signs of borderline personality disorder, which her psychologist thinks might be true. Her birth mother has this diagnosis. People with borderline are easily bored and crave chaos/excitement and will create it if it is not present. No matter what is causing her issues, it is very hard to live with at times. We are having a terrible time finding a therapist who we can afford and is also the right fit. Mental health services in the state of North Carolina are very poor. The special needs family support network in our area has given me some places to contact to try to find some funding. I have found some horseback riding psychotherapy in the area which I think would be a good fit, but it is $100 an hour. When you are talking about $100 an hour, funding quickly becomes a major issue. She is still receiving neurofeedback, which is supposed to be calming and improve her processing. However, the doctor doing neurofeedback says it will take YEARS to see improvement. I am not sure I will continue this if I find a good therapist that our insurance takes. We will only be covered for one or the other.

This is a very typical pose of Goldilocks.
I am at a loss as to why she curls her hands this way.
Has anyone ever seen this or know why?

We are waiting for our insurance to catch up with the recent change in pediatricians. Once that goes through, Goldilocks will be having an echocardiogram to begin figuring out if she has Marfan Syndrome. This diagnosis will help us know whether or not the dizzy spells are something to be concerned about.

On a very light note ~ She is ready to start round two of braces and will also need the penguin to help expand her jaw line.

Tom Sawyer (11) ~ Tom Sawyer seems to be making a vast improvement in tolerating foods that he hasn't been able to eat in several years. Lately, he seems to be able to eat organic, unbromated wheat flour if he is given GlutenEase (made by Enzymedica) a supplement. He still reacts to barley. Many of the wheat flours in the store include barley with them, so he can't eat wheat products prepared by stores or restaurants. He does experience stomachaches if he eats wheat without GlutenEase, so we still may need to look into Celiac Disease. His doctor who follows his allergies suggested that he should be tested but didn't want him to go back on gluten to find out. However, I think it would be worth knowing if the tests are not too dangerous or invasive. He does not want to remain gluten/grain free for life if his digestive system could be cured. He continues to take l-glutamine, vitamin C, PB8 probiotics and digestive enzyme supplements to promote digestive health. To our relief, he seems to be handling all food better with less hives, redness, skin issues and behavior issues. He still looks very pale most of the time and complains about exhaustion. I am interested to see what our new pediatrician thinks about his food issues. He seems to be filled with fresh views on what might be going on with the kids.

The dentist is sending Tom Sawyer for an orthodontist evaluation. We knew this was coming for a long time. His teeth are crowded and his chin is starting to recede (just like his biological sister). He has always had very thin and deformed enamel on his teeth which increases the chance of infection and complications. He has already had dental surgery for a growth in his mouth a few years ago. We are concerned about how to keep him healthy through this process. Fortunately, our orthodontist has done a great job with Goldilocks and says he has lots of ways to help Tom Sawyer with his sensory issues.

Tom Sawyer, who has mild cerebral palsy, is nearly finished with physical therapy at this time. While he needs more, our insurance will only cover 16 sessions a year. Consequently, the physical therapist is giving him a list of exercises to do at home so that he can keep making progress (that is, if I can make him do them often enough). He finds physical therapy very painful and it brings him to tears. Still, Tom Sawyer has made amazing progress and can do many things that he could not do at the beginning of this Summer. He can sustain his energy level better and keep up with other children for longer periods of time. I am hoping that the special needs gymnastic class he recently started will help him keep working on his trunk and legs.

We will be looking into an occupational therapy evaluation once PT ends in a couple months. Writing is such a struggle for him. His hands tremor and his whole body tenses with the process. The physical therapist said he is having trouble because his core is so weak and recommended that an occupational therapist could help with fine motor as well as some gross motor. In this way, he can continue getting help for his core while working on the smaller muscles in his hands as well.

Little Red Riding Hood (9) ~ There is really nothing to tell here. She is by far the healthiest and easiest child I have. She struggles a bit with balance when dancing (more than she should after so many years of dance). This is probably because she inherited a mild case of pigeon-toed walking, which would be of little concern if she wasn't interested in dance. We are in a holding pattern to see if the dance studio thinks she should return for a few more sessions of PT. She starts dance classes again next week, so we will see then what the teachers think of her progress over the summer. She has done lots of yoga, standing on her toes, and other balance work to improve her balance.

Well, there is an update.

Blessings, Dawn

Summer Week 2 ~ France

On My Mind ~ This week has been filled with highs and lows. There have been tears shed and shouts of joy (sometimes within hours of each other). Such a roller coaster life is sometimes! One of the lows I am experiencing is the realization that I have "grown out" of a group of friends that I have had for a long time. I had the opportunity to go out with them after a very hard day this week, and I just didn't want to. I came to the realization that I needed gal pals that I could share the intense issues I am dealing with, and many of this group of women just wouldn't get it. They have adopted as well, but their kids are normal. I would just be a downer on their fun girls' night out or would have to fake how much fun I was having when I really just wanted to cry on a good friend's shoulder. Actually, this has occurred to me the last few times I have had the opportunity to go out with them. The majority of these women are fair weather friends, not rainy day friends. (Kristi, you are not included in this rant! You are a lovely any weather friend.) So, it is time for me to move on and stop pretending that I can make myself fit into this circle of ladies. They are nice women, but they are not what I need in my life right now. The upside is that I have been forming a friendship with a new woman who is a mother of two special needs kids. She is a wealth of information, a homeschool mom and she "gets it". I don't have to pretend at all with her. Also, our kids get along well. Happily, when one door closes...another door opens.

Happy Anniversary! My husband and I had a wonderful anniversary this year. We had a special dessert and watched The Hobbit late into the night on the actual day. What a long movie. Then we went out to dinner last night. We went to a Mexican Caribbean place and had a delicious dinner. The arrangement of food on the plates was really impressive. I wish I had taken the camera. We then took a walk in the rain (my practical husband had an umbrella with him) around our small city and enjoyed the night life. Then we went to the Chocolate Lounge and had chocolate macaroons and Chocolate Stout Cake. We finished our date at Walmart. LOL! (We had to go back into our parent roles and get a few essentials before morning.)

Summer Learning ~ On our journey "around the world," the kids and I visited France this week. We started watching the 1956 version of Around the World in 80 Days. So far, it is a great movie. We also watched a YouTube documentary on Paris and a documentary on the Louvre. We did lap booking pages and located France on the map. Below is the list of books we read.

• The Secret Cave Discovering Lascaux
• The Glorious Flight Across the Channel with Louis Bleriot
• Mirette on the High Wire
• The Daring Nellie Bly
• Next Stop France
• Katie Meets the Impressionists
• The Louvre All The Paintings

We also made crepes, French apple pie and French lentil soup. Almost everyone loved the soup.

The kids completed several more lessons in math, and Goldilocks finished Time4Learning, first grade. I am pleased that she stuck with it and completed one grade so quickly.

A New Adventure ~ We started attending gymnastics with the Special Olympics this week. Tom Sawyer and Goldilocks will probably qualify to compete. Little Red Riding Hood will not qualify to compete since she is "normal", but as a sibling, she is allowed to practice with the team throughout the year. Tom Sawyer and Little Red Riding Hood loved the gymnastics. They had so much fun. They even got to run and learn how to vault. I am sure Goldilocks will enjoy it when she gets to attend (she is in respite care this weekend).

Special Needs Parenting ~ This was a rough week in many ways. Goldilocks had a hard time maintaining herself and even did some unsafe things, including throwing hot tea on her brother. Thankfully, it did not burn him. However, it was obvious that she was in need of respite for a few days and, fortunately, she was able to be removed to a therapeutic respite care provider who has worked with us for years. We are becoming desperate to find some more intensive help for her. It is imperative that our home be a safe place for everyone who lives here. Also, Timothy is having some trouble with a teacher at college in his Traumatic Brain Injury program. She is picking on him for not appearing disabled enough! Individuals with hidden disabilities are often misunderstood, but I didn't expect this to be a problem in a program that specializes in individuals like him. We are really feeling the stress in the parenting realm right now. It is such a challenge to get everyone the help and support they need (including support for Mom and Dad). We just have to keep pushing forward with faith and love.

Blessings, Dawn

Week 35 ~ The Zoo, Nature and Swan Lake

Swan Lake ~ And so it begins! We are in the midst of our dance studio's production of Swan Lake With a Splash!  The kids work very hard for months, preparing for each of these performances. They are so excited when it finally comes time to get on the stage. They have no stage fright and I love to see them enjoying their passion. This year Goldilocks is a dog, Little Red Riding Hood is seaweed, and Tom Sawyer has two roles -- a police officer as well as seaweed. The girls also have a separate performance for their aerial arts class in the middle of the coming week. One girl will be a bird and the other will be Princess Padme from Star Wars. That totals up to seven shows in the next week. We will be very busy people for the next few days!

The Zoo ~ We had an awesome time at the zoo for Mother's Day. The most exciting part was watching Tom Sawyer and Goldilocks go up in an amazing obstacle course. If you want to read more of our impressions about the Columbia Zoo, go here.

Chimney Rock ~ Since my husband had the week off, we decided to visit a local attraction. We drove out to see Chimney Rock. It is a bit costly for us locals. However, we wanted to visit, since our kids are growing up here and have never seen it. It really is a spectacular sight. We also went on two of the hikes within the state park grounds.

All the Rest ~ We are still in different stages of this cold. However, for the most part we are on the mend. Tom Sawyer and Little Red Riding Hood played lots of education games (multiplication war, Life, and Borderline USA) this week. They also did Teaching Textbooks, Explode the Code, and watched CNN Student News. Their favorite book this week was Math Sentences with Math-terpieces The Art of Problem Solving. This book was great. We read each page and then solved each puzzle by writing down the math sentences. We also enjoyed the latest SQUILT piece from Homegrown Learners's blog. Goldilocks did lots of catching up on Time4Learning, plus spent hours in job training (yard work with Daddy) this week.

Tim Update ~ This week, Tim and I visited a wonderful day program for individuals with brain injuries. This program's goal is to increase life skills and provide lots of social outings to the participants. It attracts the most high functioning brain injured in our area and some of Timothy's friends from his special needs college class attend it. The program writes up goals for each client and helps them achieve their personal goals. It looks like a wonderful program for Tim, and he will be testing it out for a few days next week. If all goes well, he will start going a few days a week in the very near future.  I am very excited to find this great place for him to spread his wings a bit more on his road to more independence. Hopefully, it will enhance his life.

We are one week out from the end of out 2012/2013 school year. The kids are ready for a change. We will still be doing about 1.5 hours of school a day, but with a twist. I will post about it soon. Here is one last picture of my youngest monkey.

Blessings, Dawn

A Very Busy and Blessed Week

On My Mind ~ Oh my!  What a blessed week we had.  I can hardly count all the blessings that were bestowed on our family.  The biggest blessing is that Timothy made it through surgery safe and sound.  Another huge blessing is that we sold our home 17 days early.  We didn't have to pay a double mortgage for a single month!  We got a call on Wednesday (while we were in the hospital 200 miles away from home) that, if we could make it home and get the piano out of the house, we could close on Friday.  It didn't seem possible, but the doors opened and we were able to make it happen!  We are now the proud owners of only one home ~ a much more comfortable position.  During the move we had decided to sell the piano, since I had to face the facts that my kids were theater kids, not piano kids.  There is only so much time we have with our children, and when they have lots of special needs, there is even less time for teaching all of the extras.  Music is very important to me, but they get lots of exposure to it through dance and theater.  I just had to let it go.  I spent several desperate hours our first day home trying to sell/donate the piano.  In the end, it went to a family I had spoken to years ago who is raising a child with similar issues to Goldilocks.  They had a very limited budget and had been looking for a piano for a long time.  Miraculously, we were able to find professional movers and get it moved to their home in less than 24 hours!  This is the studio piano my Mom bought me when I was 16 years old, and it is such a blessing to know it went to a good home.

The Hospital ~ We arrived at Duke University Hospital on Monday and did all of the pre-op tests.  All went well and he went in for surgery Tuesday morning.  The surgery went very well, amazingly with no surprises.  After surgery, we teased Timothy that he must be losing his touch.  He is famous for surprises in the operating room.  Timothy wanted a hamburger almost as soon as he could form words.  The recovery nurse thought he was a riot.  Within hours he was eating Jalapeno chips and a large Angus burger.  That boy has a stomach made out of steel!  He was released in the afternoon on Wednesday, and due to needing to get home to close on the house, made the long, uncomfortable trip home that night.  He was a real trooper.  He can't lift anything for a month or walk his dog, but otherwise he is well on his way to a full recovery.

Left to right ~ Timothy being wheeled out of surgery, front of hospital, Timothy's old pacemaker (the kids new favorite "Show and Tell" item), Moving to the short stay unit, Siblings hanging out with brother at the hospital, A happy young man who just finished a soda and hot fries.

At Ronald McDonald House ~ Ronald McDonald house was a great experience as always.  It was fully decorated for Christmas.  I think I am ready to get in the mood now.  Little Red Riding Hood fell in love with one of the therapy dogs who visited.  The dog could do all kinds of tricks and loved to lick her face.  We were treated to a luxury room this time, complete with our own kitchenette and bathroom.  That was such a treat.  Tom Sawyer lived in the room, watching Cartoon Network (yuck).  This is why we will never have cable television.  He loved it all and got his fill until next year.

The Nutcracker ~ We made it home in time for the Nutcracker.  I am really amazed it all worked out.  The kids went to dress rehearsal and are in the process of completing the three shows.  They are a bon-bon, a puppet, and a mermaid.  My show kids love it all. 

As you can imagine, we are a tired crew ~ or at least Mommy and Daddy are tired.  We did a lot in the span of six days!!  I am looking forward to a fun and relaxing December. 

I am joining Homegrown learners.

Blessings, Dawn



Ode to Ronald McDonald House

Ok, it isn't a real ode, but you won't hold that against me, will you?  I like the sound of the word "ode", but lack the time and energy to actually write one.

Ronald McDonald House has provided a soft place for my family to land since 1999.  We started going to Duke for Timothy's pulmonary and cardiac care when my husband was stationed at Fort Bragg.  At the time, I was a new highway driver, and the drive up there about did me in.  It helped so much to stay overnight at RMH after a long day of appointments and then get up in the morning and take that highway trip back home.  We soon moved across the state and much farther away from Duke but remained Duke patients.  Thankfully, I am now a comfortable highway driver.  However, the 8+ hour round trip on top of a 6 hour visit with four kids would be nearly impossible to accomplish in one day.  I am so thankful for the years of restful nights at RMH.  Our time is coming to a close with them.  Although Timothy will remain a Duke patient for as long as we live in North Carolina, he is aging out of the Ronald McDonald House program.  He will be allowed to stay with them long enough to get through his next cardiac surgery (in about a year).

Each room has a theme and we got a cute princess room this time.  It was perfect inspiration for Little Red Riding Hood's upcoming party.  This room is a pretty good size by RMH standards.  A few years ago, we had to squeeze our family into a room so small that we had kids sleeping on pillows in the closet! You had to crawl over the sea of beds from the doorway.  The size of the room doesn't matter for those of us who are only staying a few days.  You spend most of your time at the hospital or in the common areas anyway.  

One of the things that is so special about RMH is the fully stocked kitchen.  Everyone gets their own space in one of the refrigerators.  There is also a house refrigerator and house stocked pantry from which you are welcome to take food.  In addition, dinner is served most nights.  Volunteers from the community come in and cook lovely meals.  They also have volunteers that come in and hold game nights, bingo night (with prizes), craft nights, and therapy dog visits.  What a relief for exhausted families to not have to worry about dinner or how to entertain their children after a long day at the hospital.

A fish fry and Shrimp Boil!

We are so grateful for the many helping hands that have welcomed us over the years!  Sometimes we have arrived with screaming babies in our arms and other times with worried hearts for a child who could not handle the transitions of RMH and needed to stay at home in respite.  That time the staff provided extra phone cards so I could keep calling home and checking on her.  They really do their best to provide for your every need.

We will be leaving a piece of ourselves with RMH.  Here is a ceiling panel that Tim made in 2003.  It is a work of art from Tim's very own Jackson Pollock period.  It hangs next to dozens of other ceiling panels in the kitchen.  All of this extra care costs the families a tiny $10 a night (less for those who stay a very long time).

This trip was extra special, because we got to visit with my homeschool bloggy friend, Leslie.  Our families have met once before and we had a great time visiting them again.  THANK YOU, Leslie, for hosting our family again.  You really must come our way some day.

Update on Tim ~

The appointment went well.  The doctors decided to do some extra tests since they can see we will be facing more pacemaker surgery in the next year.  Our entire family spent the day wandering from appointment to appointment all over that huge hospital.  I think we walked a few miles.  So far the test results are good and Tim looks healthy.  His heart rate under the pacemaker was 41 beats per minute, finally making him not fully pacemaker dependent.  In other words, if he was in a terrible accident that damaged his pacemaker, we would have time to get to the hospital.  What a nice change after years of being told that damage to his pacemaker would mean doing CPR until we got to the hospital and much less chance of survival than present circumstances.  Earlier in his life, wherever we lived, a rescue helicopter was always informed to be ready to whisk him to emergency care, as he would have less than 5 minutes to live.  This time, the doctors were overall very pleased.  The most important test results will be in later this week.  We are praying that there are no surprises in them.  Also, they changed the activity setting on his pacemaker so he should have more energy to walk Boomer farther.  

Lastly, my kids are so good at waiting room waiting.  I was so pleased with their ability to get through the super long day.  We packed a lunch and took games, coloring books, the Kindle and the laptop with DVDs.  Sometimes they just played imaginary games like the picture above.  They sat in that window sill during one of our longer stops for 2 whole hours.

Blessings,

Dawn

Happy Birthday Tim!

I am playing catch up here.  The card reader went wonky and I couldn't get my pictures to load. 

This past week Timothy turned 21!  What an amazing journey it has been.  I have talked loads about what a miracle it is to have him here with us, so I won't rehash it.  But, we are so blessed to have him alive and well.  Timothy wanted to have a party with his fencing friends.  He decided on a medieval theme.  I think he chose that theme so he could have lots of meat at the feast. LOL!

He has a really nice set of friends.  Most of them are from larger families and are homeschooled/or from strict households.  They are really well behaved and do well with multi-age groups.  It is so nice to see in this day and age.  They had no problem including the little kids in their activities (plus parents and grandparent as well), and everyone had a super good time.

They started the party off with a fun game of Amtgard.  Basically, (from my perspective) they chase each other around with padded foam sticks and hit each other.  I am told there are all kinds of rules, levels, and a national organization but, this is what it looks like.

After Amtgard, everyone went on a neighborhood scavenger hunt.  This was so much fun.  We broke into teams and received our lists of things to look for and a map of how far we could go.  I am so glad I came up with this idea because it fit the time perfectly.  Everyone got a President's gold dollar for completing the mission.

On Timothy's actual birthday, we went on a long nature walk in a local state park.  Timothy loves to be outside, and this was a perfect way to celebrate his big day.  Even when he was an infant, the outdoors was a calming place to him.

Tom Sawyer is like his big brother in many ways.  He also enjoys the great outdoors and has a birthday coming up at the end of April. 

UPDATE ON BOOMER

Boomer is turning out to be a wonderful dog for Tim.  Tim is growing by leaps and bounds with this new responsibility.  Boomer is growing by leaps and bounds, too.  In fact, we got a bit of a surprise at the vet's office.  She said that he was a Labradane.  You read that right.  Boomer is a lab/Great Dane mix.  I guess Tim got his big dog after all.  On the bright side these dogs make great family dogs and he is a quick learner. He is doing very well in puppy kindergarten.  He weighed 35 pounds at his vet appointment (that is a six pound gain in two weeks)!!  However, he does have a lot to learn, as the photo below proves.  What happens when the table is not completely cleared after dinner and the puppy is left unattended for five minutes?

Good thing I am an animal lover. LOL!

Blessings,
Dawn