Army Life for the Wife

I've been an Army Wife for almost 8 years. So when my husband casually mentions over dinner Monday evening that he is going to the field soon I'm not surprised. I'm thankful that here in North Carolina going to the field doesn't mean an 8 hour drive to the middle of no where (good bye Ft. Lewis/Yakima). I ask the now standard questions about how I can reach him in case there's some type of family emergency for any of his soldiers.

I vaguely remember a kiss goodbye this morning and while I have no idea what time it was I sensed that it was earlier than the normal 4:30-5:00 am time range. I am blind as a bat without my glasses or contacts and the alarm is on his side of the bed so I never know what time it is.

I found a note in the kitchen this morning saying he got a call last night--in the field for the rest of the week. I am happy that I have 8 years of Army wife training to fall back on. I'm looking forward to the tons of little projects that I have to accomplish while he's gone. Mike was gone often in the beginning of our marriage. So much so that I have major issues accomplishing anything when he is home. I don't want to waste that time with him working on silly little things that can wait until another time. So I'm looking forward to the little things that I'm able to be in control of while he's gone. I'm absolutely turning the sprinkler system back on (Mike insisted that we turn it off because it was wasteful and unfortunately I haven't been able to prove him wrong because strangely enough the grass hasn't died but it is a little dry), I'm turning the AC down to 75 instead of the husband mandated 77. I'm going to plan and replan Olivia's 4th birthday celebration because there's no one around to get irritated when I change my mind again and again.

Ball Game

We went to our first Durham Bulls game last July before Olivia was admitted to the hospital, we had a great time. Thanks to Groupon I got a great deal on a mini-package of Durham Bulls tickets this season. We had a blast with Olivia last year and we couldn't wait to go as a family this year. It's a beautiful ballpark, it's small and clean, it's right in the middle of downtown Durham, it's easy to find parking. We had great seats right along the 1st base line. I'm really glad our seats were in the shade because the temperature has been in the high 90's around here lately with a heat index over 100*. We're not complaining though, it's nice to enjoy the warm sunshine! We're already looking forward to the next game we're going to in July.

The Drugstore Game, Week 4

Today I made money by shopping at CVS, here's how....





Pampers Diapers (Mike has several soilders having babies next month and we usurally deliver a meal and a package of diapers after they come home from the hospital)
-$11.99 on Sale for $8.99
-$2.00 Coupon
-$1.00 Extra Care Buck
Total Price = $5.99

Aveno Hair Care Products (with Olivia's sensitive skin this is the brand the doctor has recommended she use)
-$6.49 each (I bought 4 products totaling $25.96)
-$6.00 in coupons
-$10 Aveno Mail in Rebate
-$10 Extra Care Bucks
Total Price = NEGATIVE 4 cents (I made 4 cents buying this stuff)

Ziploc Freezer Bags
-$3.29 on sale for $2.50 each when you buy 2 (I bought 4 boxes spending $10)
-$2.00 in coupons
-$5.00 in Extra Care Bucks
Total Price = $1.00 just 25 cents per box

Huggies Swim Diapers
-$8.99 on sale for $7.99
-$1.50 coupon
Total Price = $6.49

CVS Brand Gummy Candies
-$.99 per package (I bought 3 packages, 2 of them were on sale for 24 cents and 1 was sale for 49 cents)
-$1.00 off purchase of 3 coupon that I printed in the store
Total Price = NEGATIVE 3 cents (I made 3 cents buying this stuff)

Olay Regenerist Facial Moisturizer with SPF (I've heard great things about this product but haven't tried it because it seems so expensive for a drug store brand)
-$19.99 on sale for $9.99
-$5.00 coupon
Total Price = $4.99

Total $18.31

I was able to use a $4.00 any purchase over $20 coupon as well as extra care bucks to pay for my entire purchase today!

Remembering/Relearn/Reload

This week Olivia seems to be remembering more things. We're continuing to wean her FK506 (her main anti-rejection medication) and I'm not sure if the changes are due to the medication decrease or disease progression or recovery from transplant or any number of other things. It's as if Olivia's body and brain are a light switch with a dimmer, someone is slowly making the room a little brighter. Over the last week she has started saying more words. She's also started clapping again when she sees something she likes. She loved applauding for Peter when he was running around in his Batman pj's, she also claps when she sees Mike come home from work and when I give her Popsicles. Olivia has started to stack blocks again which she hasn't done in months. Overall she's starting to play more appropriately with toys. She seems to be more aware of herself and her surroundings. We've also been working with a picture/symbol board and she seems to be responding very well. Olivia is also gaining a little weight and she is much less picky about what she eats. She's even branched out to eating red meat and shrimp! Olivia is also much more coordinated this week and she's much stronger. She's able to go up and down stairs by herself now. Her balance is improving. I'm hoping things continue to improve.

J*U*M*P*M*A*S*T*E*R

He Passed!!!! Mike has passed Jumpmaster school! A jumpmaster is a person who supervises the jumping of paratroopers or other parachutists from an airplane. They are typically experienced senior jumpers. I'm so proud of him!

Batman

Meet Peter, the Caped Crusader. Peter added a new word to his vocabulary today, he can now say Batman, pronounced "ATman". Olivia was throughly entertained by her brother's hero antics, she applauded as he ran around like a little maniac.













Oh and by the way, I love the new camera so much I just couldn't pick just one (or even two or three) shots to share, I was able to narrow it down to six.

1st Day of Summer

We celebrated the first day of summer with a really long walk in the heat. According to my pedometer it was over 5 miles but I'm no sure that's accurate, in fact I'm sure it's not accurate. On the way home the sun was shinning right on the kids and I got worried about Olivia getting too much sun so I double timed it back to the house. By the time we got home I was exhausted!

By 5pm I let the kids pay barefoot in the back yard while I had a glass of wine. Bring it on summer, we're ready for some fun!

Happy Fathers Day

We tried to make Father's day last all weekend around here.
We began on Saturday evening by going to mass as a family for the first time in over a year. We're just beginning our search to find a church home here but so far our search is off to a good start. Mass with both kiddos went better than expected. Peter randomly applauded throughout the service, it was hilarious. We are so blessed to be able to begin our Father's Day celebration with our Heavenly Father!





We also finally bought a camera! More on that later but I'm very happy that things worked out so that we got the camera on Father's Day weekend! We enjoyed playing with it all weekend!



Olivia helped me make breakfast-in-bed for Mike. Waffles with home whipped cream and fresh berries. Peter happily slept in until almost 9 am!!



We headed to the neighborhood pond for a picnic.




We're loving the new camera!












During nap time I sent Mike off to a movie by himself so I could fall asleep reading and burn the cake I was making for Father's Day dessert. It turned out better than expected considering I left it in the oven for about 20 minutes longer than I should have, fresh baked pound cake with strawberries and whipped cream. Yummy end to a yummy day!

To all those Fathers out there....Happy Father's Day!

The Drugstore Game, Week 3

Huggies Diapers $19.99
-$3.00 Coupon
+$10 in Extra Care Bucks
=$6.99

Colgate Toothpaste $2
-$1.00 Coupon
+$2.00 in Extra Care Bucks
=I made $1.00 by buying this!!!

Hawaiian Tropics Suntan Lotion
2 bottles $19.98
-$2.00 Coupons
+$10.00 in Extra Care Bucks
=$7.98

At this point I'm half way through my 6 week trial of playing The Drugstore Game. Overall I've purchased total of $80.01 of merchandise (Scope Mouthwash, Gilette Bodywash, 3 boxes of General Mills Cereal, 1 jumbo box of Huggies diapers, 1 tube of toothpaste, 2 bottles of sunscreen), I've paid $40.87 out of pocket and I have a total of $22.00 in Extra Care Bucks to use at CVS so basically I've gotten $80.01 of stuff for $18.87. Is it worth it? I'm not sure yet. I am starting to enjoy it and it was exciting to get my receipt today and see that I paid so little and got so much. It is time consuming, I'm spending about 30 minutes a week preparing my weekly CVS list but it is fun to feel like I'm getting such a deal! Check back next week for another update.

Prayer Request

Our next door neighbor from 5200 was an adorable little boy named Shawn. I know I've mentioned him before on the blog. Shawn has acute lymphoblastic leukemia. He was diagnosed when he was 10 months old. He received his transplant at Duke the day before Olivia did. Today Shawn's family learned that his leukemia is back, that there are no more treatment options. My heart is just breaking for his family tonight. I'm really struggling to try and make sense of this tonight. Shawn's family has been through so much.....his initial diagnosis and treatment at the University of Virgina, his transplant at Duke, the 11 months post transplant. Please keep Shawn an his family in your prayers. Here's the info that Shawn's grandma posted on their blog this evening.

To all our friends and family.

I am writing this update with no real idea how to write it. Please forgive me if I ramble or get off topic.

Shawn had a clinic visit on Monday it did not go well, his platelet count was 22, normal is 150. Many of his other numbers were low and he has been bruising really badly for a couple of weeks now. On Monday they scheduled him to come back today for a Bone Marrow Biopsy.

We took him to clinic this morning, he was given a platelet transfusion, his count was 16 this morning. He had his biopsy around noon today and we received a phone call that we prayed his transplant would eliminate us ever getting. It was not to be so.

Shawn has relapsed. He has maxxed out on all treatment options for Infant ALL and there is nothing more that can be done. His Dr.'s at UVA have talked to his Dr.'s at Duke and they concur, there is not more treatment.
Shawn is not a candidate for a second transplant, he did not reach the 1 post transplant mark, in addition to that there has been little to no success with 2nd transplants in Infant ALL.

The Dr. has given Shawn 6-12 months.

Right now we are not sure what we do next. We are just trying to absorb all of this and figure out our next step, beyond keeping Shawn comfortable and treating his symptoms. WE are going to love him, and try to let him live more like a normal little boy.

With a very heavy heart
hugs to all
A

Good Bye Baby Curls

Peter was long overdue for a haircut. Mike had Monday off so he was available to help wrangle the kids at the salon.
To be honest I hate his haircut. I miss the baby curls. My little baby boy is gone forever, he's been replaced by a bright and busy big boy. I will readily admit that since our trip to the salon on Monday I've cried over the loss of those precious curls, not once but several times. In fact I'm tearing up right now just thinking about it!


The before.....

Peter was excited to ride in the tractor.

He started to get a little bored, it seemed to take forever.

Sure I'm smiling in the picture but I'm not coping well. Peter is oblivious to my emotional breakdown.

Look at my expression. I wanted to scoop him up out of the chair and run.

Olivia was happy that she wasn't the one getting the trim.

He looks years older already!

Literary Aspirations

Peter and I had so much fun at the library last week that we decided to make a repeat trip on Sunday with the entire family. This time Peter discovered a new friend in the Children's section. He even gave his new friend a kiss goodbye.

H-O-T

It has been hot around here lately! The temp yesterday got up to 101 on Sunday! We're not complaining around here though. After years of the pacific northwest we're ready for some heat! Of course it is only June, I'm sure we'll be dying by August. We headed to our neighborhood pool to beat the heat. Peter has been a little confused ever since his big bubble bath experience last month (the original bubbles post can be found here). Now whenever he sees a large body of water he says "Bubbles". It can be a lake, a puddle, a pool, the waves in the ocean (although to be fair the waves did look a little bit like bubbles), to Peter it's only "bubbles". We're trying to correct him but he stubbornly insists on referring to all water as bubbles. Peter and Olivia both enjoyed the pool.

The Drugstore Game

I've been following coupon and money saving blogs for a while. It seems like people are getting the most incredible deals at drugstores and I've decided to give it a try. I could easily walk into a drug store and fill a little hand held basket with tons of "necessary" items....a new lipstick, a trendy nail polish or eyeshadow, a new shampoo....and in the time it takes for one of Olivia's prescriptions to be filled I've easily spent $100. I've been apprehensive about trying the drugstore game because I know what a temptation all those little "necessities" can be. I also don't want to end up with closets full of toiletries that we would never use. And to be completely honest it all seemed a little confusing. I've had to read through the instructions and helpful hints for drugstore shopping several times. I knew that I'd need some strict guidelines to prevent my frivolous spending. I've decided to try it for 6 weeks and I've decided that my weekly limit for investing in these fabulous deals is just $10 a week.

I decided to focus on CVS because based on the information online it seems to have the simplest coupon policy/reward program.

Week 1 (last week)

• 2 bottles of Scope mouthwash normally $4.50 ea., on sale for $3.99 ea. I had 2 $1 off 1 coupons making the mouthwash $2.99 each and then I got $4 in extra care bucks (to be used as cash at any purchase at CVS until July). So essentially I paid $2 for two huge bottles of Scope. Not an enormous success but a good start since this is something we buy at least once a month and I usually spend about $4 a month on it.

Week 2 (this week)

• Mike's Old Spice Body Wash is on sale for $4/bottle and you get $4 extra care bucks when you purchase one. I have a buy one get one free coupon so I'm going to spend $4 and get 2 bottles of body wash and get $4 in extra care bucks so it will end up being free.
• General Mills Cereal is on sale for 3 for $10 and you get $4 in extra care bucks when you buy 3 so you're basically getting 3 for $6. I have 2 cereal coupons $.75 off one and $1.00 off 2 so I'll be getting 3 for $4.25, each box of cereal ends up being $1.25.
• Total I spent $12 out of pocket and then spent my $4 extra care bucks from the previous trip so I spent $8 total and have $8 in extra care bucks.

Now that I'm writing all this down I'm wondering, is it really worth it? I guess every little bit adds up and these are things that I do buy regularly. I still have 4 weeks to go to see it the drugstore game is really worth it. Check back next week for another update.

Respite, the Reality

Today (actually right now as I'm typing this) is our first experience with Respite care. This time last week I had big ideas of grandiose things that I would do with Peter while Olivia was playing with Ms. J (the respite care provider). The reality is something much different. I didn't plan anything for Peter and I to do so I was scrambling to get out of the house as Ms. J arrived. Ms. J wanted to take Olivia into the back yard so that Olivia could play before it got to hot. Peter already had his shoes on so that he and I could go but when he saw that he wasn't getting to go outside with Olivia he had a complete melt down. He did perk up when he got in the car with me, just the two of us.

We drove to the library with the windows down, a rare treat since we can't have the windows down with Olivia in the car. Peter loved the wind blowing in his face and I loved seeing the wind blowing his sweet curls. I worried that I'd left Olivia in the hands of a virtual stranger. We had fun at the library, Peter loved the toddler size furniture in the children's section. He had fun picking out books, but if there's not a dog on the cover then he's not interested. We came home with 3 books about Spot the dog. I wondered what Olivia was doing. We left the library. Peter said bye bye to every single person we saw as we were walking out the door, from the librarian to the bum outside the library. I love that Peter is the complete opposite of Olivia at this age. Olivia was always very shy and has just recently started to open up. Peter is as outgoing as can be! We headed home so that I could make lunch and get Peter down for his nap. And of course I had to know that Olivia was really ok. Now I'm sitting upstairs blogging while Olivia is wandering around with Ms. J downstairs.

I know I'll really appreciate and enjoy the break that respite care provides but it'll take me some time to get there.

Day +321 Clinic Recap

Today we all headed to Durham for Olivia's clinic visit. We haven't been in 4 weeks so I really can't complain.

Basically things are going well. Dr. Paul is on his inpatient rotation so we saw a different doctor, Dr. Prasad. It can sometimes be frustrating to see different doctors but they really practice team medicine at Duke and it is always patient centered so even though we haven't see Dr. Prasad in months he knew exactly what was going on with Olivia. It has been a while since Dr. Prasad has seen Olivia and he was very impressed with how well she's doing. He was happy to see her running around and giggling and laughing at him. We're going to begin weaning Olivia's final steroid. Everything is on track for her 12 month studies next month. Olivia is having some very mild stomach/digestion issues. Her lab work looks great and she isn't showing any signs of the dreaded Graft vs. Host disease yet. The consensus is that Olivia might have some food allergies. Since she has asthma, eczema, and seasonal allergies it is also probable that she has some food allergies. We're going to try going lactose free around here for a bit and see if that changes things. We're also incorporating allergy testing into her 12 month studies. Olivia is also starting to have some sleep issues, when she goes to sleep then she sleeps well throughout the night. Every once in a blue moon (but twice in the last month) she will just not go to bed, she stays up almost all night long giggling and playing in he room. I know that sleep issues are common for kids with Sanfilippo syndrome so I was worried about the direction that we're heading but Andre assured me that it's the result of the changes we've made to her medications as we're weaning them down. Overall it was great clinic visit.

I really wish I could have gotten a cute picture of the kids together because they were excited to sit together in the big chair. Its just hard to keep these too still. Olivia seems to have the sit still and smile thing down, Peter, not so much....



Olivia is used to waiting for the doctors at clinic



Peter, not so much. He thinks he's being tortoured.



What a difference a few months makes....Olivia is now okay with sitting under the tent to get her breathing treatment by herself so I can stay with Peter outside the tent. Peter now understands that he has to wear the mask when Olivia is in the tent.






We all had a nice relaxing trip home!

I'm Late, I'm Late, For a very important date!

I am a get there early type of person. I was never able to master the art of arriving someplace perfectly on time. I was always early. It never bothered me, I like to be there a little early, I hate feeling rushed. My time is valuable and I recognize that other peoples time is equally valuable. I think it's rude and disrespectful to be late.



When you get married everything changes as you adjust to having merging two different people's schedules and "leave the house" routine. Apparently when Mike and I got married I learned that it's my responsibility to somehow ensure that his phone, keys, wallet, ID, and credit card are in my purse. He does not carry his credit card or ID in his wallet, I have stopped trying to understand why. I've had to adjust my "leave the house" routine to make sure that we are actually able to leave on time.



When Olivia was born that routine changed as well, there's the diaper bag, the baby essentials, the right stroller, toys, etc. Then as Peter joined our family the routine shifted again. Unless I get everything ready the night before it's almost impossible to leave the house in under 30 minutes. It's crazy.



But I can't even blame my most recent tardiness on my children. Yesterday we had an FRG meeting, it was on post at 5:30. The babysitter arrived at about 4:40. I was in the car by 4:50 but then I didn't see my military ID in it's usual spot in the car, I ran back into the house to look for it but gave up after a few minutes because I didn't want to be late. I was back in the car by 4:56 and headed to the meeting. I planned to go onto base using a different gate since I didn't have my military ID. I got to the gate at 5:18 (still doing ok on time). The guard was very understanding, I showed him my drivers license and pointed out that our vehicle was registered on post. He instructed me to hop out of the car, open all the doors and pop the hood and show him my registration. After he helped me open the hood of the car (I can never find that stupid lever) I began to frantically search through the glove compartment for my registration. Of course I have no idea where it is, the guard tells me he'll just call it in. The guard calls, apparently my registration is expired. The MP's (military police) are on their way. I continue frantically looking for my registration but find my military ID instead. Lovely, if I'd only had this 10 minutes ago I could have gone through the regular gate where they wouldn't have checked my registration. The MP's arrive, I think they take pity on me because I'm looking like the white rabbit from Alice and Wonderland. Apparently my registration expired the day before. The decided to let me go, warning me that I could be pulled over for an expired registration and could be given a citation and that technically the vehicle could be towed because it is not legal. I finally arrive at the meeting, only 15 minutes late.

Spaghetti

Respite

I may have mentioned that last month I began the process of getting some respite care. Army Community Service has a respite program though which respite care is provided for qualifying children at no cost to the family. It does seem like a great program but it's been quite a process to get things started. The doctor had to complete a 10 page form, her school teacher, physical therapist, occupational therapist, and speech therapist all had to complete various forms. I had to supply a copy of her IEP. These documents were reviewed by medical administrators who then forwarded them to Army Community Service. We then had a home visit with the respite care coordinator who evaluated Olivia and officially determined her "eligible." He then used a a formula (his word not mine) to magically determine that based on various factors we qualified for 32 hours of Respite care a month. Of course a board had to meet somewhere in order to make this whole thing official. It has been quite the process. It seems like a lot of hours to me at this point but I guess that's a good thing. If we had a family member living near us they could become our respite care provider but since my husband is in the Army and we've moved 6 times in the last 4 years I'm not sure how that's relevant. They did give me a 4 page list of qualified respite care providers in the area. I have spent some time speaking with several of them over the last couple of days. We're in the process of finding people that will be good fits for Olivia and our family.

This afternoon we met J. She was a special education teacher for over 20 years and has spent the last 15 years working as a play therapist. Olivia seemed to enjoy meeting her. J took copious notes during our meeting, it was an absolute pleasure to talk with her. She will be playing with Olivia every Friday morning. Peter and I will have 4 hours to ourselves. My head is just spinning with ideas for me and my little boy to spend quality time together. I am also very happy to give Olivia this time to just play, without any other purpose, no goals, just fun time for her.

Rough Day

Today was a rough day around here. Olivia's health is good but cognitively she's all over the place. It's review time----she's being evaluated by the physical, occupational, and speech therapists for routine evaluations. It's also IEP review time. I can't help but think about where Olivia was several months ago. In September we were thrilled that Olivia was released from the hospital, we were actively working on potty training, she was still using words and hadn't lost any throughout the transplant process. She loved doing puzzles and was continuing to learn new things. I don't know what happened between November and June but she is not the same little girl. It's devastating. I love her dearly and it's terrible to watch her slipping away. I am really doubting myself lately. About 6 weeks ago we noticed that Olivia seemed to be very angry, she was becoming aggressive, she was biting and hitting people. I make a conscious effort to back off, to not push her all the time, I took a step back from my "therapy mom" personality and focused more on being a loving, playful mom. Today Olivia ripped a page out of Peter's baby book. I was devastated! I was angry and depressed. I was mad at myself that it was in an area that she could get too (the bookshelf in our living room). I was angry with myself for not being thankful that she's able to run and walk around and pull books off shelves. I put Olivia in a time out. She hasn't been in time out in weeks, I wasn't sure that she was getting the concept of time out so I stopped using time out about 2 months ago. Of course the time out today didn't make a difference to her at all. She was oblivious and had no idea why I was so mad at her.

Today sucked and I'm glad it's over. I'm tired and I'm still angry and I hate Sanfilippo syndrome.

On the Horizon

Last summer was spent driving cross country and then living in the hospital with Olivia. There were weeks at a time when I didn't get to even breath the outside air last summer, only the ultra purified and filtered air of 5200. It's an understatement to say that we have big plans for this summer. Mike's unit here doesn't go to the field nearly as often as other units he's been with (but he does jump out of planes on a weekly basis so I guess it's all a trade off). The good news is that since he's not in the field for weeks at a time we're able to plan some family fun activities!

June

• Durham Bulls Baseball Game (thanks to a great package deal on Groupon.com)
• Pool Time at the neighborhood pool
• Picnics and Paddle boats in the park in our neighborhood
• Summer reading program at our library

July

• Possible Weekend trip to visit Mike's brother in Washington DC
• Week in Durham for Olivia's 12 month post-transplant studies
• Durham Bulls Baseball Game
• Week at the Beach

August

• Trip to Houston/New Orleans to visit family and friends and my Grandmother's birthday
• Durham Bulls Baseball Game

I'm also going to try to make a fun summer beverage each weekend. We celebrated Memorial day with "Beeritas". They were super easy and pretty yummy. We mixed one can of the frozen margarita mix, 3 beers, about 5 oz of tequila, and juice from 1 lime. Served in a cold mug with a salted rim. It made an enormous pitcher, we each had 2 and there's still plenty left over, maybe it will still be good this evening....

I'd love to hear what everyone else has planned for the summer. And if you have any fun summer beverage recipes I want those too (alcohol or non-alcohol)!