The Last Winnie the Pooh

In the midst of the storms, time is flying by. I am aware of it and try to cherish each day accordingly, but sometimes things still sneak up on me. Some days I am grumpy, and other days I am so glad to still have all my boys at home that nothing really bothers me! I dread the empty refrigerator days ahead!

This year, I only have one long list of supplies to get instead of three! It is a little bit sad, but all of the "big" money will go to high school fees for those laptops. So it is a good thing we don't have to get a long list in addition to that, for budget reasons. So I enjoyed getting those first grade supplies and the little extras that make backpacks special. First grade! When did that happen? Kindergarten flew by way too quickly. And I dropped off my boys almost every single day and picked them up AND saw Sam before lunch almost every day. And it still flew by too fast...

And then the school clothes shopping. I remember shopping before Andrew went to kindergarten. I am a huge clearance shopper, so I don't wait until the last minute for everything. I found the cutest navy and red striped pj's at the outlets in Blowing Rock. They were $5, and they were so cute! But Andrew kept saying he did not want them. Finally, he said he did not want to wear those to kindergarten - everyone would laugh at him! After I assured him they were just pj's, he was fine. I always remember that when buying pj's. We used to get jeans, shirts, shoes, socks, etc. to fill in any gaps before school started. Everyone started with clean shoes. Will's were probably dirty on Day 2, but at least his teachers saw they were clean on the first day!!! We handed clothes down, so the favorites I found on clearance -all of the preppy Ralph Lauren stuff and adorable Gap clothes - were worn until they were almost worn out. Which made me glad Will was third. He was so hard on his clothes! And he still is! I had everything in labeled bins, and I had their closets organized just so. They maybe had a few too many clothes but not too many. Now they are minimalists when it comes to clothes. I rarely buy them things except to run or bike in. They wear the same things over and over. So I still have Sam to hunt for the "cute" boy things and shoes. He has already started liking to wear the same things over and over, so he will be like his brothers after all. I found a box of Will's old clothes a few weeks ago and washed them for Sam. They will be just the right size this fall - a few of the things he did not wear out! And Sam is so excited to wear Will's clothes!

Then there were the LL Bean backpacks - the best backpacks ever! They had their initials, and I think Peter's lasted for 7 or 8 years! Andrew got another brand when he went to high school, but it did not last. Will's was dirty and looked several years old after a short time, so I went with a durable outdoor brand for them and am pleased they won't need new ones this year! Sam's backpack was big enough for his folder, books, and diabetes kit. When it frayed a little around the front, I was so disappointed. But I called PBK this summer and explained why I loved it, and they sent me a duplicate. After finding the coordinating lunch box at the outlet this summer, he is ready to go for $8. I had skipped LL Bean for a while because they changed their backpack a little bit. But we still have an LL Bean lunch box that is six years old that we use as Sam's diabetes kit.

So this year, I will be dropping off one little person at Hardin Park for the first time in 11 years! I have always had two since Peter started school! When Will was in 7th, Sam was in the preschool there. How weird! And one will be driving the others to school and home from practice! Although that is wonderful and gives this mom a lot of freedom, I am so thankful for my little buddy who loves to see me in the afternoons! It helps the transition that I am not yet ready to fully make! As most parents are starting to let go when their child is a senior, I really cannot yet. I can some, but our situation is very very different. So I have to find the line and walk it to give him freedom while taking care of him. I want him to be able to be free and independent - that is what I am working for.

When we shopped last week in Pigeon Forge at the outlets, there was the softest, cuddliest Winnie the Pooh. He was on sale for the lowest price I have ever seen. Sam has Pooh bears that were hand-me-downs but not a big soft Pooh like this. I sadly thought if I did not get him, I never would! So I bought him and carried him close to me the rest of the day. The last Winnie the Pooh for these boys...

And when it's time to start letting this youngest one go, I will be better at it I am sure. I will keep onto him and teach him and train him to take care of himself and his health. His time and efforts now are an investment in his future health. And I have a lot more years to do it. Although...they will be gone in a blink! So I am very diligent in this every single day and remember that when it gets old. If I don't do it, he won't later. And of course I have plenty of help!

So, as school starts this year, I will bravely accept that my boys will be a SENIOR, JUNIOR, FRESHMAN, and FIRST GRADER! And I will strive to enjoy every moment, every race, every funny moment, because this time with them has gone by so fast. I am so thankful I was able to stay home with them while working part-time when they were so little. I look back and know that this time would be so much harder if I had not! What special gifts they are! And all they have been through with each other will teach them for whatever God has in store for them. I just pray they keep on the path He has for them.

Happy School Year!

Andrew's Appointment with the Pulmonologist today

Andrew's appointment in Charlotte went well today. Dr. Black said that his lungs are in "excellent" condition, and there is no damage. If Dr. Black had not searched for answers, Andrew would probably still be sick and end up with lung damage and many other bad things. A lot of people with immune system issues do fight infections frequently even when they are correctly diagnosed, so I know that we have a lot for which we need to be thankful. He told Andrew to continue to take the Advair to help stop things before they start. He is still at risk for bad infections, but we can try to be as ready as we can. And we will know how to treat him more effectively. I just don't even want to hear that cough! (And right now I am not!)

Sam has been swinging from very high to very low today. It's been frustrating. I thought maybe his insulin pen was not working, and we did use up the last of it today and started another cartridge. Even with that, he has been hard to keep up with! I can only hope tomorrow he will be back on track. And we will chalk this up as just a weird day.

Summer is flying by. And it is HOT in Boone! I hope our schools can cool off before school starts and while the teachers prepare their rooms.

Thanks for praying. We praise the Lord that Andrew's lungs are strong and healthy. Dr. Black said when Andrew is well, he is well. That in itself is amazing! We thank Him for Dr. Black and his interest in Andrew. He has truly been a blessing.

Again, thanks for the prayers. So many people need them right now; and we know how much they help and what strength, assurance, and hope they bring - being able to entrust such huge things to Someone else.

Have a great rest of the week!

Special Prayer Request

Andrew's last two treatments have taken longer, and he has lots of the medication pooling under his skin in all three sites. It took over three hours last night, and it was very slow going. He clamped off one, and it made the other two worse. He has started eating healthier - even though he was already a healthy eater. I am a little concerned that he is even leaner than before. Because of his fat loss many years ago, he does not have what most of us have. Even what very lean people have. His excess is gone.

I just pray that this will resolve itself so we can continue the SubQ treatments. I will make some calls yesterday. He also had a lot of bleeding after removing the needles from the two abdominal sites. We have had a little before but not anything like last night. It quit pretty quickly with pressure from a cold washcloth, but it was a little odd that both bled. His leg was harder to start, but it probably did better. So we may have to find new sites.

Thanks for the prayers. He is sleeping better with his better diet. We still have not gotten his iron as the pharmacy was having trouble receiving faxes. So I will do that tomorrow too - even if I get a temporary kind.

Have a great week!

Andrew's new numbers

Andrew's new numbers are a tiny bit lower, but they are still over 700. We won't check them again until October, so that will be a longer wait for me (the numbers watcher!). But he is doing well. He looks really good. His iron is low which maybe accounts for him being so tired a lot. He ran a 5K on the track tonight, and I watched him favor one leg again. Fortunately one of the coaches noticed and called out to me. We will try to get him to the trainer soon. He does not know he is doing it! He did it all through outdoor season, and it drove me crazy to watch! So we keep doing what we are doing and add some iron.

Sam's other stuff was fine. So he is good to go for a while. He has kept me on my toes at VBS this week - swinging a little more than usual or doing the opposite of what I think he should. But he is good with mostly good numbers.

Pete and Will rode their bikes up the Blue Ridge Parkway to Floyd, VA, today! I know they probably rode over 100 miles, and Pop picked them up a little ways from the house. We are going to get them tomorrow and cannot wait to hear all about their adventure! Pete borrowed a neighbor's bike and has not been on one for a long time. But he and Will really wanted to do this, and it will be a great memory for them. I hope Will was easy on him. Will rode over 50 miles one night this week in 2 1/2 hours.

Thanks for asking. I was hoping for bigger numbers, but he does need what he needs. We will find out what that is when he goes through an illness time. We are still trying to get him as ready as we can for fall. So thanks for the prayers!

Love,

Wendi

Three Charlotte Appointments

The boys and I got up early early and left at 5:30 for their endocrine appointments. The doctor saw both boys together, so we were done early and did not have to wait for the second appointment! It pays to have an early appointment. We were out before 9:00.

Andrew got a good report and does not have to go back for a year. We did not do labs, but we ended up getting one at his next appointment since they were drawing blood anyway. Dr. Parker said that he looks good and strong and called him a lean, mean, fighting machine. He doesn't know the half of it! Since Andrew is already two full inches past Dr. Parker's projection he gave me last year, I guess he is tickled with his progress. He talked to him a little bit about driving, his upcoming senior year, and college!

Then it was Sam's turn. His a1c was down a little more and right below where they want it. I told him about Sam's 23, and he thought that was unbelievable. However, since he was 33 a little bit after; we know it was that low! I told him I was in charge of him and had given him insulin, so he just reiterated as usual how important it is to keep checking him. He said his injection sites look great and seemed very pleased with his numbers and how he looks.

We went to the Southpark Mall to kill time and eat lunch before the next appointment. Sam found an Ipod that he liked (he said). And I thought, "Oh no!" He and Andrew spent some time in the Apple store. We missed one road going to the next appointment, but fortunately I had Rachel google it for me, and we found where we went the wrong way! I do enjoy driving through those beautiful old neighborhoods.

Dr. Patel spent a lot of time with us. He talked to us about going ahead with some more special testing. Having Sam with us as a reminder of the diabetes may have made him decide not to wait. Some of the tests take a long time. He also wanted to test some absorption things with some vitamins. He also wanted to enroll Andrew in a study - just using his information but not his name, etc. We will keep doing what we are doing, and we hope to hear those new numbers in the next couple of days. Dr. Patel is not sticking with a certain number until we go through a season of illness and determine what is best for Andrew. I still have hope that he will not have to do this for life. Being in the study will give us more information, and, at the very least, help others. Unfortunately, Andrew has a most remarkable medical history (per Dr. Patel); but we are always willing to help others if we can. I know the doctors at Vanderbilt told me that they had seen so little of the lipodystrophy that they remembered and used some of my descriptions and pictures because there just wasn't that kind of information available. I only told them what I knew and what I saw and appreciated that they listened! Same with this. Anything we have had tested or found out may be able to help someone else. And others on the registry may be able to help us.

For such a hot day with an early start, we did pretty well. We were glad to finally get home this evening. However, it still felt like we were off the mountain with the heat.

Thanks so much for the prayers. I appreciate you asking about Andrew - and Sam.

The Bear was last Thursday. I have very limited computer time, so I did not share that Andrew was 22nd! He did not run his best time, nor did he have any easy race; but he did what he could do. And we are thankful for that and happy for him. Peter was 10th and had a difficult race as well. He could not run last year, so it was great to see him out there. Being up on that mountain takes your breath away - first, if you ride the bus up and the driver stops while you feel like you are almost vertical hanging in the clouds. But second is best. The views and the majesty of what God made just cannot be ignored! It is absolutely beautiful. I feel so thankful to be able to see that. We still pray for the rider (and his family) in the Grizzly the next morning who was killed in a wreck. He was eight places behind Andrew in The Bear. Something like that sure changes my perspective on things. None of us are guaranteed another day here on this earth. So the important things immediately shift to the front. The most important, of course, being knowing where we will go when we die and why. Not wondering, but knowing. How thankful I am that we can know.

Thanks again! I will email his numbers when I get them.

Wendi

Milestone!

Happy 4th of July! While I have spent the day working outside and cleaning in the basement, I have been praying extra hard for all of the military men and women and their families. While I consider the gift of salvation I have accepted as most important (of course), I certainly do not want to take our country's freedom for granted. And to live in this country is to live in the best place in the world!

Saturday evening marked Andrew's 10th treatment at home! As I flipped back the pages of the little book we use, I could not believe it! I still hate drawing up the medication into the syringe and still worry about air bubbles and try to get rid of them, but Andrew is doing the hard part. He has had a hard time with the thought of needles lately. Once he puts them in, he is fine. Pete offered to put them in this time, so that motivated Andrew to go ahead and do it! I offered, of course, and was glad he still wanted to do them himself!

We go back next Monday to two appointments and hope to have super high numbers. Sam has an appointment where we want his numbers to be low, so I told my Sunday School class that I will try my best not to get mixed up. I just hope we feel relief after these appointments and get all of the numbers.

His legs are doing better, so thanks to those of you who prayed for that. He is wearing the Zensah sleeves; and if anyone has any other suggestions, we will take them! He does not have to wear them all of the time, so that is good.

Andrew and Peter both run The Bear this Thursday. The past couple of years this race has been a source of encouragement to all of us after a tough time. I pray it is this year as well. It's not just that Andrew has done well ~ it's that he CAN. No matter what, we are looking forward to a good and strong senior year for him.

We have so many people on our prayer lists at church and home. We know you all do too, and we appreciate all of the prayers and encouragment you give to us! We really really do! It's not something we take for granted.

I will email again when we get Andrew's numbers and see how those treatments are going. I hope to really puzzle those doctors so that they know Andrew's good swift reaction to all of this had Help! And of course, I pray that he will be better and be able to keep on running (his races and in his life).

I heard Matthew West's new song a few weeks ago. I almost felt like he had talked to me on one of my bad days! I will copy and paste it below. Google it if you feel overwhelmed. It is a great reminder that we are not left to do anything on our own.

Happy 4th again!

Love,
Wendi





STRONG ENOUGH Lyrics
Matthew West

You must
You must think I’m strong
To give me what I’m going through

Well, forgive me
Forgive me if I’m wrong
But this looks like more than I can do
On my own

I know I’m not strong enough to be
everything that I’m supposed to be
I give up
I’m not strong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough
For the both of us

Well, maybe
Maybe that’s the point
To reach the point of giving up

Cause when I’m finally
Finally at rock bottom
Well, that’s when I start looking up
And reaching out

I know I’m not strong enough to be
everything that I’m supposed to be
I give up
I’m not strong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough

Cause I’m broken down to nothing
But I’m still holding on to the one thing
You are God and you are strong
When I am weak
I can do all things
Through Christ who gives me strength
And I don’t have to be
Strong enough
Strong enough

I can do all things
Through Christ who gives me strength
And I don’t have to be
Strong enough
Strong enough

Oh, yeah

I know I’m not strong enough to be
everything that I’m supposed to be
I give up
I’m not strong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
Strong enough
Strong enough
Strong enough