Up, Up and Away

It is time once again for Abbey's team visit at the Shriner's Hospital in Chicago. For this trip, our local Shriner's set us up with Grace Flights of America. Grace Flights works with another organization called Angel Flights. Both groups use private pilots who donate their time, money, skill and aircraft for medical transportation.

We had two legs to our trip. I was both excited and nervous about the whole adventure. Rodney and his dad flew us for the first leg. They were very friendly men and quickly put us at ease despite their jokes implying their inexperience. We had to step up on the wing to enter the plane (a Piper), and Abbey and I rode in the back. She did great and even took a nap.

The picture below is the Cessna Skyhawk that we flew on the second leg. Since he was flying alone, Mike let me sit in the front passenger/co-pilot seat. Mike gave me a map and showed me how to follow along. He told me about the different gauges and instructed me on some of the basics. It was really interesting. Because the wings are up high on this plane, we got to open the windows and feel the air rush by. I looked back at a very windblown Abbey and saw a big grin on her face.

Since I was in the front seat for the second leg, I wanted Abbey to be able to hear my voice. I didn't know if not seeing my face would upset her. Plus, the second leg promised to be bumpier, since the Windy City had a wind advisory out. That girl didn't fuss a bit--not about me leaving her in the back by herself, not about the bumpy ride, not even about having headphones on her head. She did decide to pull them off about half way there, though. She is a trooper, don't you think?

While we were flying, I mentioned to Mike (a native of Chicago) that I had been to Chicago for three other trips but had never seen anything except the hospital, hotel, Ronald McDonald House and airports. As we got close to Chicago he asked me if I was on a schedule. When I told him I had the rest of the day free, he said he'd fly me by downtown. He pointed out all kinds of landmarks: The Sears Tower, Trump Tower, Navy Pier, the Bean, some museums, stadiums etc. We got to fly over the lake, too. The color of the water was such a beautiful aqua. I had prayed on a prior trip that the Lord would provide a way for me to see some more of this city. I never thought it would be from 2000 feet up in a Cessna! Isn't that great?!

I will admit that the descent and landing into Chicago was a bit scary with the turbulence from all the wind combined with the view from the front seat. I was certainly praying, and it took me a minute to catch my breath after we hit the ground. All in all it was very exciting and fun. I am thankful for two safe flights and to our wonderful pilots. I look forward to doing it again.

Back to School

Going back to school for Jack has been a delight. It is old hat for him, and he hasn't missed a beat. He likes his teacher, Ms. Patti, and to my surprise knows most of the kids in his class. There are only three students (all girls) that were in his class last year, but he knows his other classmates from just being around last year. I am eager to watch him learn as the material becomes more challenging. I just don't know what to do with the quiet house.

Off to School

I started to title this post, "Back to School." Then I realized that wouldn't be accurate. Molly isn't "back to school," rather, she is starting school. If you remember that in February, we decided to start Molly in kindergarten this year. Today was her first day.

Over the summer she wasn't very excited about the idea and focused on how much she would miss me. Buying a Tinkerbell lunch box, a hot pink water bottle and a light pink backpack with a monogrammed, cursive M on it made all the difference. This morning she snuggled with me and told me how excited she was to be going to school "like Jack". Today was just a testing day, and she won't go to meet her teacher and classmates for another week. But, the first day is behind us. She had a great day and told me she had already made a new friend. I found it ironic that her new friend, "Valerie" shares a name with one of Molly's imaginary friends. I am pretty sure that this time, "Valerie" is a real girl.

Back Again

So, I've taken a five month hiatus from my blog. But, I haven't abandoned the idea. I still want family and friends to be able to keep up with our lives across the miles. It has been a busy spring and summer and things have gotten more complicated as Abbey and Caroline have grown in their abilities. They are all over the house, climbing on furniture and bringing me books with commands to, "Read". So, time for blogging has been hard to come by. But, I'll start again and see how it goes. Maybe I'll even have time to post pictures from the two weddings we were able to participate in. Or, maybe not. :o)

Admission, Pre-Op and Plans for Tomorrow

Abbey has done great today. She has been happy and not too slow to warm up to all the strangers she has seen. We’ve interacted with several nurses, a nutritionist, the social worker and the nurse practitioner. Everyone has really focused their attention on her and given her time to warm up to them. There is no rush to see her and move on. They are giving great personal care.

We have gotten to play in the play room and around the playground. Ed has even gotten to do a bit of Wii bowling. We have eaten our meals in the cafeteria, and they have been helpful in providing food that suits Abbey’s tastes.

We get the double occupancy room to ourselves, since she is an infant. I’m not quite sure why they do it that way, but I am glad we don’t have to worry about her cries bothering a neighbor. Plus we have room to spread out. Sadly, I don’t get to use the extra bed that is sitting empty on the other side of the room, but am consigned to the pull out chair.

Tomorrow things will start around 6:15ish. Thankfully, she is the first on the schedule. The plastic surgeon and anesthesiologist will each come to check in with us. We will have to sign consents. They will probably take her to be prepped at about 6:45. They said that she will be prepped and ready to begin surgery by about 7:30. It should take 2.5 hours or so.

They will be “freeing up the muscles and tissue” that she already has. They will repair the nasal mucosa (tissue that is the floor of the nasal cavity), reconnect the muscles of the soft palate, and repair the oral mucosa. She will be in the ICU tomorrow night.

We will keep you updated. Thanks so much for your concern, love and prayers!

Ronald McDonald House

All I can say is put your spare change in the box next time your are in McDonalds. I'm sitting here on the queen sized Select Comfort bed at the Loyola Ronald McDonald House. I couldn't be more impressed. The house is so nice and comfortable. They have all kinds of food that volunteers have provided. Everything is so clean and organized. They have anticipated our needs, and we are able to relax. Although our stay is short, many stay a long time. We met a family who is going on their fifth month here. I can't imagine having to deal with that kind of medical circumstance, but I know that this house would be a bright spot in a difficult time. Ed will be staying here each night, and I will stay with Abbey in the hospital. (At least that is the plan.)

So, we are thankful for this organization. We are thankful for a safe trip. We are very thankful that Abbey only had one major meltdown. (She got fussy a few times but books, snacks and my entertainment staved off too much crying until the last 30 minutes.) We are thankful the snow ended earlier in the day, so we didn't run into road trouble, either.

Here's hoping for a good night sleep in preparation for all of the preop. stuff we will endure tomorrow.

Lots

Well, lots has happened since I last posted a bunch of pictures. We had Abbey and Caroline's birthday; my sister's family came for their first Memphis visit and got to meet the twins; there were many Christmas festivities; and we are still deicing from our big winter storm. But, there has been lots of other stuff going on to keep me from posting the pictures and stories from all of this fun stuff. The two main things are that Abbey and Caroline have learned to walk and that both my iphone and laptop computer have broken. So, now I only get snippets of time to come upstairs and do all of my computing.

In addition to all of that, we have had lots of appointments to schedule and attend. Jack's attention and anxiety problems may be serious enough to merit some sort of intervention. So, Ed and I are getting some help with making those decisions. Also, he has had several dental appointments with more to come. He is in the process of getting braces on six of his top front teeth and the first of two expanders. He will get the expander for the lower teeth first. Then he'll get the upper one, just like Molly had. Right now, he has spacers, and his appointment for the braces and lower expander is in the next few weeks.

Abbey has just entered the Tennessee Early Intervention Program. This morning I worked on creating a Individualized Family Service Plan (IFSP) with her care coordinator. (Thankfully, that professional comes to our home.) Abbey is delayed in four of the five areas they test: adaptive, speech, motor and cognition. Of course, speech is the main area of concern. In a month or so, she will have a early interventionist come to our house on a weekly basis to work with her, and she will probably also have a speech therapist coming, too.

Caroline still has a flat spot on the back of her head. If it is severe enough, then it could hurt her brain growth. The pediatrician thought it was borderline, so she referred Caroline to a specialist to be sure. We have an appointment with the neurosurgeon on Thursday. If the neurosurgeon feels like it is significant enough, then Caroline will probably have to wear a helmet to correct it. Hopefully it will be fine, and we will be done with this issue after the one appointment.

Thankfully, Molly isn't seeing any specialists. Nevertheless, her growth and development have been on my heart and mind and in our discussions lots recently. Ed and I have decided to put her in kindergarten instead of first grade next year. She is doing great with homeschool kindergarten, so that isn't the reason. We just feel like she will be at more of an advantage down the road if she is one of the oldest in her class, instead of one of the youngest. Also, we think it will be better for both her and Jack if they are two grades apart. She won't be immediately following behind him, which will be good for both of them. This has taken a lot of thought, but we have decided it will be best.

Finally, there is me. While I don't have appointments of my own, I have been in transition with my work. I was getting canceled over 50% of the time with my old speech job, so I have branched out. I will still be working some days for Baptist Rehab, but I will be putting in the majority of my time at HealthSouth Rehab. in downtown Memphis. So, I have had several meetings and orientations with them. Ironically, I was unable to make it to my first real day on the job at HealthSouth this past Saturday, because of the ice storm. They didn't cancel me , but the ice prevented me from getting there that day. I am wondering if the Lord is trying to tell me not to trust in my ability to make extra money for the family. :o)

Thankfully, Ed isn't taking on anything too new. He always has meetings and appointments that fluctuate, so we are used to his busy schedule.

So, sorry for the lack of posts and pictures. I haven't given up on blogging. I doubt I'll be able to get caught up on what I've missed and that makes me sad. But, hopefully, I'll be able to get back on track. As you can see, though, we have had lots going on.

Once Again

Yep, Abbey's surgery has been cancelled again. She got a cold a week ago Sunday. She really only has a bit of a runny nose right now. But, even a bit is enough to cancel. They don't want any swollen nasal passages when they are working to create the floor of her nasal cavity. They don't want any chance of infection around the surgery site. They want 100% health when she goes under anesthesia. They reminded me that while this is important surgery, it is "elective". So we need to wait for it to be as risk free as possible.

So, I am frustrated once again. There is so much coordination that has to happen. Ed has to get someone to preach two Sundays for him. Mom and MaryAnn have to clear their schedules and travel. The church folks make themselves available to help. Jack's teacher and carpool folks have to be informed. The several weeks beforehand we have to be careful about who we have over to the house. Jack couldn't have any play dates during his fall break or during Christmas break. Now, her new surgery date is right after his spring break. So, he won't be able to have play dates then. Plus, we have to miss church at least one Sunday. We have tried a 3 week quarantine and just living normal life but being careful. She has gotten sick both times. There is all of this, not to mention the emotional build up of thinking about giving my daughter to strangers who are going to hurt her, even if it is for her own good.

I trust that she is in the Lord's hands, and that we all are, but I don't want to have to do this again. Yet, even as I type this, I am reminded that this is so small in the scheme of things. It is so fixable and such a blessing to have the Shriner's help. There are so many worse things we could be dealing with right now. So, I guess I'll snuggle with Molly and not worry about all the things that were still on my to do list today.

Thanks for caring about our journey.