Nathan's Magical Wish Trip- Pre-trip report

[teresajoy]

Teresa, the scar goes about 1/2-3/4 of the way around. He is very proud of it. We joke that we are going to get him a tatoo to complete it around his ankle!

Well, isn't that just like a boy! How funny about the tatoo!!!

To mulitquote, click on the middle box in the right hand corner of each post you want to quote (the one with the " mark in it). It will turn red, then do that for the next post you want to quote, on the last post, click quote (or you can click reply on the bottom of the page) .

 

[HeatherSue]

Oh my gosh, I LOOOOVE the pictures of Sam and William in their shirts!!! They are SO funny! Tessa and I got a giggle out of their superhero poses!

The pumpkin is GREAT!

I can just tell people about Sam when they think I'm being overprotective by not letting my kids on a trampoline!

Heather and Teresa- I have read your blogs/websites or whatever you call them about your family history. Very, very touching. I wish I had the computer know how to do something like that.

Thanks for reading our websites (we made those sites long before anyone ever knew what a blog was).

 

[jessica52877]

Carol, Thank you for sharing Nathan's story! He is so special and you'll have gone through so much! I too would celebrate every year, it is NOTHING you should EVER get over! What a blessing to have him. I had to get up 3 times while reading it, I just couldn't stop the tears!

I sent a package for Nathan today, hoping that it fits!

I love the super hero shirts and Anna's shirts are AWESOME! Can't wait for you to see them!

I love the Mickey pumpkin and sparkle in Nathan's eyes. He is just too cute! We were at disneyland last week and I thought of the boys when we were in toontown!

And I too, won't let Dallas on a trampoline!

 

[zeppy68]

Well November is right around the corner I bet you guys are counting the days down now.

 

[oklamomof4boys]

Well November is right around the corner I bet you guys are counting the days down now.

Yes we are! We can't wait. I got a call from MAW today wanting to confirm our mailing address so they can send out Nathan's MAW back pack with all of our trip stuff. I am guessing that means no party. Oh well, we really weren't expecting anything.

Nathan got another gift from the Big Give. It is a custom Mickey Mouse sketch book from Clared. He absolutely loves it. The older boys were fascinated that it came from the UK. I love your hand writing. I will try and post pictures this weekend.

Also, last weekend William and Sam had a school dance. My boys are fairly shy when it comes to dancing. It was sponsored by the booster club so David and I were there as sponsors. They announced they were going to have a dance contest- I was sitting on the perimeter talking with people. Then someone says, " Hey Carol- Sam is in the dance contest!" I guess he was just so happy to have a healed leg! Anyway, he ended up getting 3rd place! He had such a good time. He had fun dancing with his "girlfriend". They have been " going out" for 4 years but they just started talking to each other this past year! While they were dancing, her mom and I were on either side of them taking pictures. William actually got out there and danced a little bit. There were many parents out dancing and I had promised my boys I would not do that and embarrass them. So when William was just sitting against the wall, I had one of my friends go tell him ( I had promised him I would act like I didn't know him-lol!) that if he didn't go out and dance than I would! Luckily he didn't call my bluff ( I really didn't want to dance!) and he went out and danced. He also had a couple of girls ask him to dance so I think he had a good time also.

I am so happy that Halloween is over. Okay, technically it is tomorrow, but in our small town, HS football is everything and there is a football game tomorrow. So we did trick or treating tonight. I hate Halloween. I always have. It used to stress me out to come up with costumes. We have this big costume contest and for years my kids were the ones winning. Plus, candy is a huge weakness of mine. I absolutely love it. But I am severely hypoglycemic and it makes me very sick. But I eat it- and feel crummy.

Now let's return to 10 years ago today.

Halloween was on the weekend. The 3 older boys were staying with David's parents ( they live in our home town) and they would bring them up on weekends where my parents would watch them while we were at the NICU. Nathan seemed fairly stable and the nurses convinced us we needed to spend some time with the older boys. Nathan was still where we couldn't touch or talk to him. So we decided to take the boys to the Omniplex- a hands on children's museum. The place was empty but many of the exhibits were broken or too old for our kids ( they were 2, 3 and 6). There was one area for younger kids. We finally found a place where we could all be together and have a little fun. The area had a sign that said, " Under first grade" and Tucker was in 1st grade- but the entire place was empty so we didn't think it would be a problem. After a little while, a lady came up and asked Tucker what grade he was in. When he was honest, she told him he would have to wait outside the area for us! I kindly explained to her the situation- we had been separated for nearly a month, we only got to see the kids on the weekend, we had finally found someplace for us all to enjoy, etc. but she would not budge! I couldn't believe it! We were so upset, we left and I haven't been back!

Then when we got back to the NICU, Nathan was having some complications.
Now when I think of Halloween, it just turns my stomach. I am very glad that we got it over with a day early.

 

[LindaBabe]

Oh you poor things! That's a HORRIBLE story! I wouldn't go back there either, (and would probably have stewed for years over how I could "get even").

 

[bex271]

Carol,
I know y'all are excited as we are too. I'm so glad the boys had a good time at the dance and actually got out on the dance floor. I don't blame you for not going back to the omniplex either. I can't believe the rudeness of some people.

Becca

 

[Clared]

Yes we are! We can't wait. I got a call from MAW today wanting to confirm our mailing address so they can send out Nathan's MAW back pack with all of our trip stuff. I am guessing that means no party. Oh well, we really weren't expecting anything.

Nathan got another gift from the Big Give. It is a custom Mickey Mouse sketch book from Clared. He absolutely loves it. The older boys were fascinated that it came from the UK. I love your hand writing. I will try and post pictures this weekend.

I'm so glad it arrived OK. I hope Nathan has many happy hours filling it with his own mickeys!!!

Clare XXX

 

[oklamomof4boys]

We got our packet from MAW today. It has Nathan's backpack, MAW pin, a MAW t-shirt for him, some books and stuff to keep him occupied on the trip, a stuffed dog, a disposable camera, a Birnbaum WDW guide book, our expense check and trip info. Only problem is they have Nathan's age listed as under 10 and he turned 10 2 weeks ago. I need to call and make sure they will have the right tickets for him at GKTW. I'm not sure if all the comp tickets are for any age or if there are kids ones and adult ones. Since he is 10 now, he will need an adult one.

I was hoping to have a MAW t-shirt for all of us. I'm not sure why, I just thought it would be neat and maybe get the other boys a little attention even though they don't have a pin ( not that they would be wearing a MAW shirt every day on the trip). I just think the siblings deserve a little extra also. My boys worry so much about Nathan. Maybe I'll see if I can buy t-shirts for them.

Something I didn't have time to add yesterday about Halloween. You know, I said he had a complication that day. Well, when we went back to the hospital after our "lovely" experience at the Omniplex, they were worried because Nathan's stomach was very bloated and extended. Best case scenario would be if his central line had become displaced sending all of his fluids to the wrong place. Worst case would be if it was a sign of heart failure. They did an x-ray and his central line was in place. They weren't sure what the problem was. We prayed and prayed. Nathan would frequently go into SVT- his heart rate would spike to above 300 bpm, they would give him a shot of some med in his central line to convert his heart rate down. They gave him a dose, it didn't work. They tried a couple more times-no help. They tried put ice on his neck- someone read this might work..it didn't. Last option was the paddles to shock him. Then Lawanda-bless her heart I loved her so much by now- said, " Wait, let me just try and put the med in one of his other IVs." Low and behold, it worked. They did another x-ray and THIS one showed that his central line was displaced. They took it out, surgically put in another one and the bloating gradually went away. God is good.

Now a funny story. A couple months after Nathan got out of the hospital, I noticed that his stomach was bloated and hard. In a panic, I rushed him to the pediatrician, almost hysterical. He looked at me very calmly, and in the nicest ( not patronizing at all) voice said, " When he was in the hospital he was on IV nutrition. Nothing was going into his stomach. Now he is eating. The little darling has a satisfied tummy!" DUH!!! Luckily our pediatrician was also our neighbor and dear friend. He was so patient with me over the years. He would tell us to call him at home any time. One time when Nathan had a fever, I called his office and he said, " Let's just watch it a day and see what happens". I said, " But tomorrow is Saturday. You aren't in the office on Saturday!" He said as he laughed, " You do remember I live around the corner?" I just wanted to be careful not to abuse our friendship. He and his wife moved to Dallas a few years ago. I cried and grieved like there was a death in the family.

 

[bex271]

Yeah on getting the packet and everything in it. I told dh that we were going to try and meet up with y'all at the GKTW christmas and he was happy to be meeting y'all. Could you ask your volunteer if you get some shirts for the other boys?

I'm glad you had a good nurse looking after nathan, we had several that were with us when jonah was in the hospital and it makes all the difference in the world. It's wonderful you had such a great doctor and neighbor during that time too. We have some of the same feelings about Christmas Eve that you do about Halloween.

 

[oklamomof4boys]

Yeah on getting the packet and everything in it. I told dh that we were going to try and meet up with y'all at the GKTW christmas and he was happy to be meeting y'all. Could you ask your volunteer if you get some shirts for the other boys?

I'm glad you had a good nurse looking after nathan, we had several that were with us when jonah was in the hospital and it makes all the difference in the world. It's wonderful you had such a great doctor and neighbor during that time too. We have some of the same feelings about Christmas Eve that you do about Halloween.

We are excited to meet you also! I think I will see if I can get shirts for the other boys- we would buy them if we had to. I would think it would be very hard to have a painful Christmas Eve. We almost had a tragic Christmas Eve 13 years ago. I was 12 weeks pregnant with William when I had a gall bladder attack. We didn't know what it was. My Ob/Gyn was 90 miles away in OKC and we called his on call nurse. From my description, they thought it was a pulmonary embolism, so they told me to go directly to our local hospital. The doctor we got was a quack- it was 3:00am Christmas morning when he told me he was going to remove my gall bladder. I told him I was 12 weeks pregnant and he said, very casually, " Oh, well you'll probably lose the baby!" In a panic, I called my Ob/Gyn who told me what to allow them to give me and NOT TO GO INTO SURGERY. Luckily, it all ended well. I got out of the hospital later that day, went to OKC and we consulted with several doctors. They ended up keeping me on a low fat diet throughout the pregnancy so I wouldn't have another attack and I had it out when William was about a month old. But I digress. Back to the here and now.

WE GOT PACKAGES TODAY!!!!!

Nathan got Mickey jammies from Jessica. He loves them and changed into them immediately. They fit him great- they are just slightly big-giving him some growing room-but certainly not too big.

We also all got Mickey tie dye shirts! I love them! The return address say " the Engels" but I'm not sure who that is on disboards- I probably should know, but I don't. The shirts fit all of us great. I was glad that mine fit- I have gained so much weight lately. I don't know what the deal is- stress maybe. Plus I haven't been sleeping well so I'm too tired to exercise.

Thank you so much both of you! I was at the church helping with a yard sale for the youth when Nathan called me all excited that we had packages! He wanted to open them immediately. Luckily our church is just right around the corner so I walked home so I could take pictures of him opening packages. I will try and post pictures tomorrow.

I am exhausted today. I had to get up early for the yard sale and my allergies are killing me. At least I hope it is allergies and not a cold. I rarely have allergy problems so I am not used to medicine for them. David and Tucker have lots of different allergy remedies but whatever I took has wiped me out! Nathan wanted to bake something in my Easy Bake Oven ( several years ago, the boys really wanted one but thought it was a "girls" gift so they got me one!). Luckily, David took over the cooking duties. The brownie is almost done and the 3 youngest are going to share it ( Tucker is out with friends so he misses out-lol!). I am so tired. Is 8:30 too early to go to bed?

Carol

 

[mom2lilnick]

Wow.. what a long day for you. I hope you get some rest! I can't wait to see pics of the packages, sounds awesome!

 

[AmberGreenawalt]

Carol, Becca...Are you guys talking about the Make A Wish shirts?

Awhile back I ordered us all some from the Make A Wish website. They were less than $5 a piece! I would like to get another set. I figure it supports the WONDERFUL organization that is making this all possible ad plus I don't want to have to do laundry on our trip

p.s. Carol I can't wait to see pictures!

 

[maroo]

hello everyone!!

Becca,

We only got a shirt for Lauren from MAW, too...but we asked them if we could buy some more...because we wanted to do MAW shirts one day. And they gave us all some...(And I would have bought them!)

I do think that GKTW does a great job recognizing the difficulties that the siblings also face...they give the Wish child great gifts...but also give the siblings gifts, etc. But MAW seems to have a little different philosophy...they are definitely all about the Wish Child and don't seem to do much for the siblings? I can see both perspectives, I guess...but I like the GKTW philosophy better!

Carol,

Can't wait to see pics!

 

[zeppy68]

Hopefully your yard sale went well.


Do you think I should order make a wish shirts for the only family or do you think make a wish will include this? Dont want to wait to long since we leave in three weeks.



http://www.disboards.com/showthread.php?t=1958228

 

[oklamomof4boys]

Hopefully your yard sale went well.


Do you think I should order make a wish shirts for the only family or do you think make a wish will include this? Dont want to wait to long since we leave in three weeks.



http://www.disboards.com/showthread.php?t=1958228

The yard sell went fairly well except at the end when we were cleaning up, one of my friends stepped off a curb wrong and broke her ankle! So we spent the afternoon in the ER with her!

As far as the shirts, after reading what other people said, I am guessing they only send them for the wish child. You might call your organization and ask them. I am going to call ours tomorrow. I was going to just order them from the MAW website ( thanks for giving me the heads up on that Amber! I don't know why I didn't think of that. I found all sorts of stuff to put on my "wish " list! Only thing about them is that the one they sent Nathan is blue with white writing and the ones on the website are white with blue writing. Blue shirts would stay much cleaner with my boys. So I am going to call first thing in the morning and if I can't buy them through our local chapter, I will order them. We leave in 2 weeks, surely they will get here in time. I also have to call our local chapter because in our letter it says Nathan is 9. He turned 10 a couple of weeks ago. This wouldn't be a big deal except 10 is an adult for Disney tickets. I'm not sure if this will be a problem with our comp tickets that we get at GKTW. I just want to make sure.

 

[oklamomof4boys]

I should be cleaning up the house, but I don't really feel very well, so I don't have the energy for that. So I will finish my ten years ago today.

After Nathan's little set back on Halloween, things got progressively better. In fact, David eventually decided he needed to get back to our home town-both to be with the other boys and to work. We had missed so much with the older 3. At just 3 1/2, William had learned to read while we were gone! We noticed this when we were having a weekend visit and we were at a restaurant. William looked at the office door and said, " That says off ice". He and Tucker then had an arguement because Tucker said it said " office". Sam also had pottytrained himself. He had just turned 2 and we were going to wait because every one said he would regress once the baby was here. It was hard to have David leave- he was my rock. But my parents were great. I didn't feel capable of driving so my dad would drive me to the hospital every morning. The first morning alone, I was praying on the way. I told God that I didn't feel strong enough to go by myself. Just then we passed a church marquee that said, " The joy of the Lord will be my strength!" For 6 beautiful days he got better and better. I could hold him and sing to him. I made a tape of music for them to play for him when I was gone. He was eating just a little bit of the milk I had pumped for him. I felt like I was finally being a mother to him. On Nov. 5, the doctor told me he thought we were over the big hurdles and on the road to recovery. That night, before I went to bed, I called the NICU around midnight to check on him before I fell asleep. They said he was doing great. 6 hours later I awoke with a start. I called the NICU. They said, " Did someone call you?" Okay, that isn't a good sign. I told them no, I just felt I should call. She said, " Let me get the doctor." I was really starting to panic. Nathan had started having a seizure almost immediately after I hung up at midnight. They still hadn't gotten it stopped more than 6 hours later! Finally they gave him some medicine to put him in a drug induced coma because he was jerking out his IVs and vent. The doctor said he would still be seizing, we just wouldn't be able to see it. Of course, David headed back to OKC. It was a dark day. They did 2 spinal taps and both of them came back with blood in the spinal fluid-they were confident that Nathan had bleeding in the brain. They just weren't sure of the extent of the brain damage. It was a Friday and they didn't want to do the MRI until Monday. It was a very long weekend. The MRI on Monday was quite an ordeal. Nathan had to be off of his IVs for the MRI so Lawanda accompanied him. We were quite close with her by now. She wore her wedding ring on a chain along with a cross when she was at work. She took it off and placed it around my neck for safe keeping while she kept my baby safe during his MRI. Waiting for the results was agony. Finally the doctor came out ecstatic-the MRI was normal! They let Nathan come out of his drug induced coma and he stayed seizure free for 8 1/2 years! They aren't sure how long his first seizure actually lasted since we couldn't see all of it-somewhere between 7 and 72 hours. They aren't sure if the seizures he had 18 months ago are related to the one he had as a baby ( he hasn't had another one since starting meds). He does have some problems with his memory, but they aren't sure if that is related either. As Nathan finished his stay in the NICU, Lawanda asked the doctor why Nathan had blood in his spinal fluid. He said, " I guess I missed when I did it." She said, " You have done thousands of spinal taps on tiny micro preemie. Have you ever missed before?" He said no. She said, " And you missed on a 5 pounder TWICE???" He said that was the only " medical explanation". She asked him if he would call it a miracle. He said he was comfortable with that. He then asked if we would mind starting to pray for some other babies that were critical! They kept Nathan for a few more weeks- until he could eat better on his own ( he always had trouble coordinating the suck/swallow/breathe) and we were all comfortable with taking him home. As I said before, we finally took him home the day before Thanksgiving!


ANd that is the end of " 10 years ago today!"-lol!

Now I can concentrate on trip planning! Hopefully I will get pictures posted tonight. David was busy all day putting a cover on the pool and doing the final lawn mowing. I still need to clean the house but I have either allergies or a cold. The kids are all a bit cranky- the extra hour of sleep didn't seem to help us much- and now they are clammoring for dinner. I've already fed them twice today-what more do they want?! lol

 

[oklamomof4boys]

Well, I have the house picked up at least. And guess what I found as I was digging through all the rubble- which was mostly Halloween candy wrappers. I found the cutest little drawing of a snake by Lucas. It came in one of the Big Give packages-but I'm not sure which since I wasn't home when Nathan opened them. But whoever Lucas belongs to, tell him thank you. I love the personalized touches that comes with the Big Give. Also, Nathan is wanting to wear his tie dye Mickey to school tomorrow. It might be the only way I get him out of his Mickey race car jammies- he has only had them off long enough to go to church!

 

[zeppy68]

mickey mouse race car jammies so cute!!!!!!!!!!!

 

[mom2lilnick]

Thanks for the final installment of Nathan's journey. Hugs!

I think all chapters are different, but we all have MAW t-shirts, they brought them the very first visit. Nick actually has two because the first one was small, so they brought a bigger size one when they came to tell us our official dates.

I hear ya about the white t's. If my boys get a white shirt it is a sure bet they will spill something on it, or wipe their mouth after eating something with ketchup.