Just Because

We haven't replaced our camera yet (I feel like that will take MONTHS of research and comparison shopping) but I did find an old digital camera that still works. So just because it's been way too long, here are some long overdue pictures.....
Stylin'


He's going to be such a heart breaker!

Noctournal Happenings

On Monday night Mike couldn't sleep, he got up at 1:30 am and left our bedroom to go upstairs so he wouldn't wake me. He wasn't able to go back to sleep so he just decided to go into work at 3:30 am. He finally arrived home from work around 6:30 pm to find that the kids and I had started eating dinner without him. As he got his plate I heard him coughing a bit so he was banished upstairs while I put the kids down for bed. There's nothing sweeter than a little baby boy (who am I kidding, at the rate he's growing he'll be a teenager by May and moved out by June) who happily snuggles with you for story time and then peacefully goes down for bed and says "night night" as you walk out the door. It was a long day and by 7:30 all I can do is get the kids into their beds before loosing every last bit of patience, understanding, and good parenting. Thank you God for that sweet boost!

After I got the kids into bed I went on a fun filled tour of the Walgreens pharmacies in the Fayetteville area. We needed to pick up Olivia's medication that I put on he port to numb the area before our clinic visit Wednesday. The clinic had called in a prescription to our local pharmacy. When I got to the pharmacy they told me they didn't carry that medication. I really wish they could have called to tell me that. They were certain that a different Walgreens about 15 minutes away did carry the medication so off I went. I arrived to the second Walgreens to discover that they were out of the medication but that I should try the Walgreens near the hospital so off I went again. I arrived just in time to see that the pharmacy had closed 15 minutes prior. I was oh so frustrated so I headed to Target and decided to hit up Starbucks on the way home. Of course the caffeine in the evening was not a good idea and I wasn't able to get to sleep until 11:30 or so. Mike woke up around 4am so he could go into the bathroom and hack up a lung. He proceeded to get ready to go to work. Mike has always been an early riser but I honestly have no idea what time he really needs to be at work. He was clearly sounding congested although he insists that he feels ok. He headed into Olivia's room to change her diaper (we've discovered that Olivia occasionally poops between the hours of 11pm and 5am so Mike has started changing her before he goes to work). Olivia had recently had a blow out diaper that got poop all over her bed so she got out of her bed and had fallen back asleep on the floor near in the corner. I woke up and went in when I heard noise on the baby monitor. At least it wasn't diarrhea but there seemed to be several little piles of poop. Mike was almost finished getting Olivia cleaned up so I just took her into bed with me. Olivia snuggled right up and went back to sleep but before I had fallen back asleep she started to cough a bit. I think the coughing which made her gag which made her vomit. More cleaning and wardrobe changes and she was back asleep again by 5:30. I woke up at 6:20am to discover that my dear husband had changed Olivia's sheets and disinfected her room, and already started the soiled sheets in the washing machine.

I'm a little nervous about what clinic may bring but I don't think Olivia is feeling bad so I'm not overly concerned.

Our Adaptive Home

We spent a portion of our tax return on some much needed child proofing to make our home safer for Olivia. Initially I wasn't a big fan of the baby proofing. When Olivia was little I kept dangerous items out of reach but I pretty much let her explore. She loved to pull all the pots and pans out and then crawl inside the cabinets. I figured it was her way of exploring and learning and it didn't bother me. Then Olivia learned what she should and shouldn't touch and there didn't seem to be a need to child proof. However, Olivia's new obsession with putting everything into her mouth changes things and we wanted to make sure that things are safe for her. Also while I may have gotten by without baby proofing when I just had Olivia to worry about, Peter makes things much more complicated. That boy is into everything! We now have locks on every single drawer in the kitchen, locks on several of the cabinets, gates at the top and bottom of the stairs, locks on the bathroom cabinets, locks on the closet doors in the kids rooms, and a gate in the hallway near the kids bedrooms.



We also have been hard at work finding safe things for Olivia to chew on. I made the chewy tube clips to hold her chewy tubes. I got the idea from some pacifier clips that Peter had when he was little but I used snaps so that I can toss it into the washing machine. My mom made Olivia a couple of these adorable chewy necklaces that Olivia also seems to enjoy.

Weekend Recap

Friday night I suprised Mike with a date night. We were going to see a movie but nothing looked good so we went to dinner instead. Two cocktails later I'm completely giggly.

Saturday we headed to the outside outlet mall for a very successful shopping trip for the kids. It was a little crowded though so we cut our trip short and went by Za_by's (missing that letter between "W" and "Y" again). I first discovered Za_by's in South Carolina and it's so yummy! Just like Raising Cane's for you Louisiana people and the salads at Za_by's are fabulous!

Sunday was a long lazy day in our house. It rained all afternoon and Mike had to leave for most of the day to take care of some work stuff. I embarked on a mini-spring cleaning mission and rented a carpet cleaner but then discovered that it make the carpets too wet for Olivia so I only cleaned one room. On a whim I decided I needed to order "New Moon" on demand and I've watched it at least twice since. I did find an old digital camera that still works so I'll finally be posting some picturse soon!

Hello there, I remember you!

Still no pictures but I did have some great news to share about Olivia. A week and a half ago at her last doctor's appointment they made a very subtle change to one of her medications. We went from 0.7ml every morning and every evening to giving 0.7ml every morning and alternating between 0.7ml and 0.3ml. It really is a very subtle change but it seems to have made a huge difference! Olivia's attention span is increasing. She's playing more with her toys, she's started to color again, she's enjoying actually looking at her books. She's playing more with Peter. She's talking more and actually interacting more with people. It's such a welcome change!

I've been a little MIA lately so here's the random update....

I just haven't had a lot to post about lately. Our camera is dead so I don't have pictures to share and that's always everybody's favorite. Mike did repair the broken netbook but for some reason we cannot one of the keys to work, I've just found a way to work around it as it's not a commonly used letter, it's the one that comes after "W" and before "Y". I've been pretty busy with FRG stuff lately. The FRG (Family Readiness Group for my non-military friends) is traditionally organized by the commander's wife. The purpose of the FRG is to provide information and support to families within the unit. I've had quite a few meetings and stuff to organize for that so most of my downtime has been spent on FRG stuff instead of blogging.

Peter is doing really well, he's such a good kid! He's so easy to be around and so easy to take care of, I just wish it wasn't going by so fast! He's talking more but he's so funny about when he wants to talk. He never does it when you try to get him to talk but when you least epect (insert that missing letter here) it he'll surprise you. Peter now says "hi" "bye" "mama" "dadda" "nuggets" "juice" "milk" "shoes" "socks" "go" "more". He's at a weird place where he's trying to go from 2 naps a day to just one. Meanwhile Olivia is not taking naps anymore but she does have an hour of quiet time in her room. Olivia is doing better this week. They went down on one of her steroids last week and she seems to be able to concentrate a little better. It's not a huge difference but it is a noticeable improvement and she's been able to focus enough to complete some small tasks lately...things like threading beads on a string, or dropping beads down a straw into a cup, stacking blocks, finishing a puzzle. I'm not saying she does these things all the time but she is able to concentrate for brief periods of time so she can accomplish an activity. I've also noticed her playing more purposefully with her toys and interacting more with Peter. Olivia and Peter love to chase eachother around the house then they will run into one of their bedrooms and slam the door. I've moved all the toys out of our living room, now toys either go in their bedrooms or in the family room. It seems to be working out well, I don't spend time each night organizing the toys in the living room, I just throw them back into their bedrooms and shut the door.

After WEEKS of back and forth we finally decided on a phone plan that we think will work for us. First of all we get very bad cell phone reception at our house so we were paying tons of money for a cell phone plan that wasn't working for us. When Mike took command he also got his "crackberry" so he very rarely uses his old cell phone but wanted to keep the number. Actually that's not true, Mike wanted to get rid of cell phones completely but that is completely unrealistic! We went back and forth and around again and FINALLY decided to go with a pay as you go plan. We transferred our numbers and purchased phones. We added long distance to our home phone plan (and it came with Caller ID and Call Waiting, SUCH a BONUS, we haven't had these since we lived in Colorado, it feels like such a treat). Our cell phone bill was running around $150 a month and we weren't even using all of our minutes. Hopefully this will work better for us, and if it doesn't then there's no contract, we'll just decide on something else. I will say that I think that Best Buy is absolutely the best place to go for cell phones! They were able to provide tons of info without any pressure. They were very knowledgeable and helpful, if you get a best buy warrenty with your phone (which is cheaper than the insurance plan offered by wireless providers) then they will replace your phone with a brand new one instead of a refurbished one that you might get with a wireless provider.

I got all fired up about planting some flowers and a small vegetable garden. It was going to be such a fun, learning activity for all of us but then the doctor vetoed that idea. Dirt is full fungus and bacteria and mold and Olivia shouldn't play in it. I know I could do it without her but somehow the fun is gone and I'm not motivated at all.

The weather has been beautiful here lately but windy. If it's windy out Olivia has to wear her mask and she's just not into that at all so we've been staying indoors a lot.

Today we're blessed with an "off day", no therapies are scheduled, no doctor visits. I'm debating taking the kids to the mall for Easter outfits. I've been thinking a lot about my friends in Washington, who are entering the last stretch of a year long deployment to Afghanistan. It feels so weird that Mike isn't with them, that we live in North Carolina. They still have a few months to go but I've watched them get through this year with such grace, it's given me great perspective to get through this last year with Olivia. We also have friends from Colorado who are just embarking on another year long deployment to Iraq. This is the 3rd or 4th deployment in a row for some of them and I cannot even imagine how draining it is. They leave for a year, return home for a year, leave for a year, return for a year. Yuck! Please keep all of them in your prayers.

Charleston

We went to Charleston for the weekend and met up with some good friends from Washington. It was really nice to get out of the house and away from our normal routine for a bit. It was hard to see the difference between Olivia and Wesley. He is older than Olivia and has always been more advanced but it was hard to see how dramatic the difference between the two of them is now. Peter and Maggie, who are just 2 months apart, were interested in each other but I think that the adults got a bigger kick out of seeing them together than the kids did. It is almost surreal to look at the two of them together now, I remember when Margo and I would meet up at the park and Peter and Maggie were content to just lay on a blanket boy things have changed! It was great to see them and Margo and I got to have a much needed girls night out in Charleston.

We arrived on Friday evening and went out to dinner. We sat outside but it was only the 3rd time that we've been to a restaurant since Olivia's discharge. We're learning, it's getting better but it's a good thing that the parent to child ratio was even, it would have been disastrous for us if it hadn't been. To clarify I'm speaking only of my kids, Wesley and Maggie were both well behaved and under control, and most importantly they are adorable! On Saturday we headed over to the Citadel. The weather was absolutely beautiful and it was nice to spend some time outside on such a beautiful campus. There were parades and festivities going on all weekend at the Citadel as it was Corps Weekend and it was neat to see some of the traditions. We headed out to lunch again and the kids behaved much better than the night before. Back at the hotel we headed down to the pool for Olivia's first time back in a pool since last June. We did have a minor incident and the camera was destroyed when Peter attempted to drown himself in the pool. Peter is fine but the camera did not fare so well but I was able to salvage a few pictures. After some fun in the sun Margo and I headed off on our own for dinner while Mike stayed back with the kids. It was really nice to have some time away. Sunday we got going early since the forecast called for rain and we wanted to go to the open air Market before heading back home. We were able to enjoy a leisurely stroll through the market and some breakfast at a little cafe before the rain started. Mike and I shared the most amazing chocolate croissant, I'm still thinking about how good it was! Mike also surprised me with some really pretty silver rice bead necklaces. We were back to the car and loaded up just as the rain started to poor. It was a quiet drive home. We did arrive home to discover that we didn't have any hot water but then after further investigation it was determined that the problem was really that our underground gas tank was completely empty and we didn't have hot water because our water heater is gas. Fortunately the gas company came out last night so the issue is resolved.

Here are a few of the pictures I took before I had to jump into the pool to rescue Peter. I'm glad he's okay and we were thinking of upgrading to a new camera soon anyway....

Day +236, and the 6 month review

Olivia's appointment at Duke today went very well. Olivia's labs look great, everyone was very impressed with her energy level and happy attitude. We're slowly continuing to decrease some of Olivia's meds. Physically Olivia is recovering well from the transplant. Cognitively we've had a rough couple of weeks. We talked a lot about that and where to go from here. Olivia is continuing to learn new things, she's using more words, she singing more songs, she will randomly point out different things (the scale at the dr.'s office had a sticker with the number #2 and Olivia was happy to point that out). The main issue seems to be her ability to concentrate. She is having a very hard time attending to anything. From the transplant team's perspective the difference in Olivia's attention span is the result of 3 things...a side effect of chemotherapy drugs, Sanfilippo syndrome disease progression, and a side effect of one of the steroids that she is on. We're noticing Olivia's attention span issues now because physically she's feeling well enough to get up and run away if she's not interested. We talked about how for Sanfilippo transplant patients the 9-12 month post-transplant period is often a difficult time. Prior to transplant only 4 other kids with Sanfilippo syndrome (type B) had been transplanted at Duke but more than a dozen kids with type A had been transplanted. Those kids tend to be around 2 years old and they are just beginning to show signs of the disease. That's right where we were prior to transplant, we were just beginning to see that something wasn't quite right. During the transplant itself everything gets put on hold, the focus is getting your child through transplant. The medications Olivia was on made her feel so sick. Olivia is feeling better now but time did not stop, the disease continued to progress and now that she's feeling better it's more evident. Now we're entering a time where we just have to wait. The test results show that Olivia is over 98% donor cells, her body is now producing the missing enzyme. Now it will just take time for her body to recover. The soonest they ever begin to see cognition and behavior improve is around the 1 year post transplant mark. The did say that Olivia seems to interact so well with the nurses and doctors at clinic (as well as her brother) that they are very curious to see how she does with people her own age. She loves to try to talk to the other patients and still often mentions Rachel. This weekend we'll have a chance to see for ourselves how Olivia interacts with friends. We were given the OK from the doctor to meet up with our friends from Washington while they are "back east" visiting family. We're meeting in Charleston for the weekend and Olivia has been talking about Wesley. Wesley is a bit older than Olivia but she idolizes him and thinks he's the absolute coolest, you can check out pictures of their previous encounters here . Wesley also has a little sister who is just a few months older than Peter and it will be fun to see the two of them together.

In other transplant news I'm finally making time to write about the 6 month studies....

Last MONTH (am I really that far behind) Olivia went through the same series of tests that she completed prior to transplant. Test results were carefully compared and the following was determined.....

Echo cardiogram--Olivia's heart is not showing any signs of damage, there are not any irregularities. The heart appears to actually working more efficiently but this could be the result of a different technician performing the test or better patient participation.

EEG-Very similar to the pre-transplant EEG however at her most recent EEG they were able to collect data while Olivia slept as well as while she was awake and talking. There is no sign of pre-seizure type neurological activity. The transplant process did not seem to have any effect on Olivia's brain function. At the 12 month post transplant appointment we might hope to see some changes but at this point we're right on track.

Labs--In general Olivia's labs look great. She's greater than 98% donor cells (a transplant recipient won't ever really be 100% donor cells so it can't really get any better than greater than 98%). Her body is producing blood and platelets just as it should. Olivia's blood and urine both show signs of the enzyme so she's producing the enzyme that she was previously lacking. Olivia's immunity is a little on the low side of average for someone 6 months post-transplant. We've been very slow in weaning Olivia off of steroids because of norovirus and the steroids directly influence immunity. We're more aggressively weaning the steroids now so by the 9 month mark we hope to see some improved immunity.

General Stuff--Olivia's liver has shrunk and is now normal size and shape (abnormal liver size is often one of the few physical symptoms that contribute to diagnosis). She is finally starting to regain some muscle mass in her legs and she's much stronger. The CT scan shows that Olivia's sinuses are clearing thanks to the combination of antibiotics and breathing treatments. This provides the biggest noticeable improvement to her quality of life. Last year we had to carry cases of tissue with us everywhere and Olivia's nose was constantly running. It ran literally non-stop so while this is a small change it's one that we appreciate daily. The CT scan did show some increased areas of brain atrophy, this is normal, it is not anything beyond what we had anticipated. We knew the specific chemotherapy drugs that Olivia had would cause this. We hope that this will improve but it will take some time.

Overall things look good. Some of these tests will be repeated at the 9 month post-transplant mark and then all of these tests will be repeated again at 12 months post-transplant. At this point we're beginning to see the light at the end of the tunnel. We still have a long way to go but we're slowely starting to return to life as we knew it pre-transplant. We are able to go out to eat at restrauants during off-peak times, we're just careful to wipe down the booth with our handy lysol wipes. I'm able to run into the grocery store as long as I've made sure to wipe the cart down first. Olivia doesn't have to wear a mask outside, she does have to when we're in busy public places and she always wears one when we go anywhere near an area where we know there are sick people. Our doctors at Duke have spoken with Olivia's doctor at Ft. Bragg and while we've never met the Ft. Bragg doctor I think we'll be making our appointment there soon. There was some discussion for making the transition from every other week to every three weeks but for now we're going to continue on with the every other week schedule, at least until April.

What Weekend?

We had to go to a ball on Friday night. Sometimes it is nice to get all dressed up and go to these things and sometimes it's a pain, this one fell somewhere in the middle of that spectrum. Overall it was really pricy, paying your babysitter $10/hour adds up. We had to be at the receiving line at 5pm so the sitter arrived at 4pm and we got home at 11pm, yikes! We also spent $30 each on beef and chicken not realizing that it was a Friday during Lent so we were pretty hungary by the time the evening was over. It was nice to meet more people though. On Saturday we meet with volunteers from the Make a Wish organization about Olivia's wish (more on that later on). Saturday evening we had some old friends over for dinner. One of my favorite parts about the "army life" is getting to see people again at different duty stations. These particular friends were from Colorado and it's strange to think that we've known them for so long. I made a fabulous Rachel Ray chicken dish (chicken breasts stuffed with blue cheese, green onions and pecans with a dijon mustard gravy). We had so much fun reminiscing that it was 1:30 am (with the time change) before they left. We felt like such night owls! Sunday flew by in a blur of laundry and cleaning and a walk to the park.

Someone may have had a bit too much to drink and decided that using his suspenders as a dance prop was a good idea. Fortunately no one was injured.




Maybe one day we'll finally remember to take pictures at the beginning of the night instead of at the very end, I look tired.

Mommy Moment of the Week

Peter is getting to be such a big boy and he's a great little helper. Look at all those teeth! I know he needs a haircut but I just can't do it, I know that if he does get a haircut then my little baby boy will be gone forever.

Change of Command, the "demilitarized" version

I got quite a few questions about what a Change of Command is when I posted pictures of Mike's Change of Command last week here. So here's the definition (straight from the program):

"The change of command is a military ceremony in which the outgoing commander assembles his troops for presentation to the incoming commander. The ceremony serves to inform the members of the command that they must respond to the leadership of the new commander. In addition, it establishes a definite point in time when responsibility for the unit changes from the old to the new commander."


This all sounds fine and dandy but from my perspective as an army wife this means that my husband is now attached to the command crackberry (also know as his work issued blackberry) constantly and that I should never anticipate that he'll be home before 6:30 pm. On the up side he does have his own office now and the kids and I have already become quite comfortable with this perk and we've instituted a new weekly office picnic lunch. He works longer hours but the joys of staff duty (where he was on call for 24 hours and would have to drive in to work several times throughout the night to check on random things) are over. We're told that this is one of the most enjoyable parts of an officer's career....I think Mike is enjoying it but at this point I'll save my impressions until a later date.

There were a couple of professional photographers at the ceremony and I got a copy of their pictures. There are tons but these are my favorites. During the ceremony Olivia and Peter were presented with batallion coins and they were both very impressed. There's a whole other story about the tradition of military coins but I'll save that military history lesson for another time....

Lifted

Yesterday was such a peaceful day. I felt so lifted by everyone's thoughts and prayers. The kids slept in until 8:45 when I woke them up! I was able to read my morning devotional (it was about depression, how appropriate) and enjoy my coffee in peace. The kids and I went to run a quick errand at Best Buy. I drove by Best Buy at 10 am on Monday to see if it would be crowded. I was completely empty so we actually went into the store on Wednesday. I was on a mission to get information about cell phone plans. Apparently 10 am is the time to go, there was no one else in the store and there were plenty of salespeople to give me information. You usurally can't find any sales associates in Best Buy and I had three helping me yesterday. I brought tons of information and feel ready to make a well informed deicsion soon, once I've had time to process. Olivia had her mask on the entire time and she and Peter happily played in the stroller. After lunch both kids took naps which was wonderful! Olivia hasn't been napping lately. I was able to shower in peace and solitude. Olivia woke up from her nap first and she and I played together for a bit. I had plans to go to a coffee (a coffee is a social function for officer's wives for my non-military friends) and was really looking forward to it. I haven't met any of the other wives yet. Mike called to say he was on his way home to take over child care duties but he felt badly about it because there was some unfinished business to attend to. We brainstormed a bit and decided that I would bring the kids to his office and then we could switch cars and I could leave from there and he could get a bit more work done. It worked perfectly, I picked up some chicken nuggets for the kids on the way and they happily hung out and ate while Mike finished some things up. I had a great time at the coffee, I was a little late but I had the pleasure of sitting with some fantastic women. One of them teaches 6th, 7th, and 8th grade autistic students and the other is a Spanish teacher. We had such great conversation and the spanish teacher was able to help me out with the words to a spanish nursery rhyme that Olivia has been trying to sing lately. It will be a pleasure to get to know these women better. I was only at the coffee for 2 hours but it felt like an eternity away. It was a wonderful break and I so enjoyed some adult socialization. I feel refreshed and recharged, lifted.

A friend of mine forwarded me a link to the most amazing blog. Of course I was in tears as I read it, but it's beautiful and worth the tears. Here's the link to Nella's birth story: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Struggling

We're struggling around here this week. It seems like over the last 3 weeks Olivia has changed dramatically. She has lots more energy but she can't seem to focus on anything. She's stopped playing with her toys she just wanders around the house touching things that she shouldn't. She pulls a book off the shelf in the living room, pulls the placemats off the table in the kitchen, takes the silverware out of the drawers in the kitchen, just wandering around. Her therapists have all noticed a difference, they suggested Fish Oil to improve concentration (has anyone tried this?). I don't know what to do. I'm watching Peter who's starting to do all these new fun things and Olivia is being left behind. Peter and I were playing outside yesterday and Olivia refused to come join us. She kept crawling back up the patio steps and sitting by the door. Olivia is talking more and she's easier to understand but she's not making sense. She is just singing random bits and pieces of songs. Olivia hit Peter in the head with a toy yesterday, we cried....Peter cried because it hurt, I cried because Olivia had no idea what she had done, Olivia cried because I yelled and put her in time out, then I cried more because I yelled. She saw our reactions and started laughing. She's always been so gentle with him.

I take comfort in knowing that God has a plan for Olivia. I am pryaing for energy and strength and patience to get me through the rest of this week!

Sanfilippo syndrome on the National News

This was on ABC's Good Morning America a few days ago. Please check it out! What an amazing opportunity to raise awareness for Sanfilippo syndrome. Click here: Sanfilippo On GMA

Park Play

Today was a beautiful day! We went to check out a new park but it was a little crowded so we couldn't stay too long. Olivia was more interested in people watching than anything else. She hasn't been in one place where there were this many people in a long time. She's still obsessively chewing on everything but it is a little better this week than it was the week before. The picture of her with her hand in her mouth and in Mike's mouth is pretty much how things are. She isn't chewing, she just needs to have something in her mouth constantly. I don't know if this is just a phase or a new normal, I'm trying not to worry too much about it, I'm just trying to keep her hands clean.

Cha-Ching

I posted a few months ago about my money saving new year's resolution here. I'm still working on it and I'm really pleased to share some of my progress. For a while I felt like I had been working at it but I wasn't seeing any results. Over this last week I feel like things have started to come together and I'm proud of my thriftiness and just had to share....

All for Free

• $10 Starbucks gift card in the mail that I won by using Swagbucks



• $25 Master Card Gift Card from the Huggies "Enjoy the Ride" rewards program



• Coupons a free stuff, no purchase required (Kashi crackers, Swiffer refill, Scrubbing Bubbles refill)



• A free notepad from Snapfish



• A free notepad from VistaPrint



• $15 check for reading emails and taking surveys from Inbox dollars



• A $3 check from taking a survey from Pinecone Research



• I saved over $30 today at the grocery store (for the last several weeks the average was around $25 so I'm excited to have reached this milestone

I'm starting to realize how much money people can save by using coupons but I can also see how it can quickly become an obsession. I usually try to pick up the Sunday paper and I'll print online coupons but I don't spend more than half an hour a week doing this. I am also not going near the drugstores, no CVS or Walgreens for me yet. That seems way too complicated but I know that there are big money making opportunities there. I shop just once a week, either at the Commissary or at Aldi. I have found that menu planning is saving me a ton of time and money. Our envelope system is working really well. We've discovered that we HAVE to go the day Mike gets paid otherwise we'll slip and use our debit cards. It can be hard to take out such a large sum from the ATM but it's nice to know that everything that is left can go back into savings in addition to the money that is already directly transferred into our savings account.

Mommy Moment of the Week

I love mornings around here!

Change of Command

On Thursday Mike took command of a Field Artillery Battery of around 120 people. While I'm a little apprehensive about what this next year of command will bring to our lives I know it's been something that he had been looking forward to for a long time. When Mike left the career course in Summer of 2007 he had 2 options, he could have deployed immediately with a MiTT and then taken command soon after the deployment or move to Ft. Lewis. Since Mike had just returned to the US after a year long deployment in Iraq he opted for Ft. Lewis. Mike was preparing to take command at Ft. Lewis but Olivia's diagnosis and our move to North Carolina postponed that. We're both glad that our unexpected cross-country move has not prevented him from taking a battery command.

I was very nervous about the Change of Command ceremony. I hired a babysitter from care.com (great site) who had experience working with children with special needs and she was fantastic! She sat with us during the ceremony and kept Olivia occupied and quiet. Olivia stayed in her stroller during the receiving line (germs people!) and then the babysitter took Olivia to Mike's office during the reception. Olivia was very happy to be able to run around after having to sit still during the ceremony and she thoroughly enjoyed her time just playing with the sitter. Peter really enjoyed Mike's reception. He also decided to demonstrate that he can feed himself with a spoon and inhaled an enormous piece of cake. I really wish that I'd taken a picture of the reception room before people started eating and the cake was half gone. We also forgot to take a picture as a family so I made everyone change back into their nice clothes for a picture when Mike got home from work. Olivia was very proud to wear her "pretty dress" and visit daddy at work. She also really enjoyed wearing her butterfly tights. It was a little chilly here so I put 3 pairs of tights on her so that she wouldn't get cold, of course that made bathroom trips and diaper changes especially challenging but we made it.

Thanks to our friend Jimmy we have some pictures of the ceremony. You should be able to click on the first picture and then press play--if you're at work turn your speakers down there's music.

Make your own digital slideshow

Clinic Recap

Today we went to Duke for Olivia's clinic visit for the first time in TWO weeks. It was so nice to have last week off from all things medical. No matter how much I try to prep the night before, Wednesday mornings are always a mad dash around here. I have to get ready then get Olivia up and finish her breathing treatment and meds. My goal is to leave by 8 am but that never happens. During the mad dash to get everyone loaded up into the car I walked in to find this mess on the floor.



I'm fairly certain that Olivia got the cereal down from the pantry shelf but then Peter decided he wanted some as well and somehow the cereal ended up on the floor. As I walked in I saw Olivia scurry away, she knew she was guilty. Peter looks like he loves the "breakfast off the floor" idea.

We got some snow here last night so my drive to clinic took longer than usual. The snow was pretty wet so it was mostly slush but enough to slow things down. Fortunately they did not get as much snow in Durham so the roads improved as we made our way north. I hate driving in the winter!


Olivia was very happy to see our regular nurse practicioner today. He was doing his 2 week inpatient rotation so we missed him during our last visit. Olivia's weight is up to 16 KG now and I had the nurse double check her height. Olivia is 3 and 1/2 feet tall which means that we can transition to a booster seat instead of her car seat in the car. Olivia has been unbuckling her car seat lately which is obviously unsafe and I'm hoping that using a belt-positioning booster will put a stop to that.

Both kids were actually really well behaved today during clinic. I'm also very happy to report that Olivia's labs today were perfect! I think they were her best set of labs yet. We can continue the clinic visits every other week. Just because I haven't posted her numbers in so long and today's were so good I'll end by sharing them.....

Hemoglobin--12 (range is 10.5-13.5)
Platelets--321 (range is 150-400)
White Blood Cell Count--6 (range is 3.8-14)

All of the other chemistries (magnesium, protein, sodium, calcium, etc) are well within the normal range as well so it's obvious that she's eating and processing food well.

I'm thrilled that she's doing so well physically becuase we've had a rough couple of weeks cognitively. I think that Olivia and I are getting pretty frustrated with eachother lately. I think that I've been a little bit too much of a teaching/therapist type mom and not enough of a fun/play mom. We will have to work on that over the weekend.

Imagination

I mentioned that Olivia's therapy schedule this week was changed a bit. I got confused today and put Peter down for his nap too early so he woke up about 15 minutes after the physical therapist arrived. Of all Olivia's therapies physical therapy is by far the hardest for her. It's physically demanding on her little body. I'm accustomed to making her use her words to express herself. I know she can do it so that has become a part of our routine. After everything that has happened to her little body over the last 8 months I have no idea what she can and cannot do physically. I know she's getting stronger but I don't know what she really cannot do and what she just doesn't want to do. The physical therapist is great and she and I have had a lot of conversations about this but it's still tough. We want Olivia to be challenged but we don't want it to be too hard for her. Olivia tends to do much better when I'm an active participant in her physical therapy sessions and in order for that to happen Peter has to nap. As soon as Peter woke up things started to go downhill. The physical therapist had one of those "old school" puppy dogs on wheels attached to a little string. Peter loved it!

He happily ran around the house for the rest of the session dragging his little dog happily saying "woof woof" as he went along on his way. The dog would occasionally fall over and he'd very carefully stop to put him back on his wheels. As soon as the therapist left I went to get lunch started. Peter went straight to the cabinet, pulled out my little handheld mixer and proceeded to drag it around the house, continuing to "woof woof".



Olivia wasn't having any of it. After screaming the entire 45 minutes that the physical therapist was here she just wanted to eat her lunch in peace.


Later in the afternoon Peter went to the kitchen cabinets again and pulled out a selection of plastic bowls. He brought them into the living room and then set them up on the couch. He started grabbing imaginary handfuls of food and helping himself to imaginary snacks. It took me a while to realize what he was doing. He kept walking over to the bowls then he'd walk over to Olivia and try to put pretend food in her mouth. Somehow Olivia seemed to catch on before I did because I heard her saying "thank you". It was so sweet. Sweet to see Olivia pretending because she hasn't really been into that lately. Sweet that they seemed to be communicating so well together without really saying much. Peter of course shared with me as well without even being asked. He's such a sweet boy.

Free Day

Olivia's therapy schedule needed to be rearranged this week so today ended up being a free day. It was really nice to have a free day. I rearranged the furniture in the house. I was finally able to redecorate Peter's room. When we moved here we made a transition from having 4 bedrooms to three so Mike combined Peter's room and the guest bedroom. Peter's room had an enormous king size bed along with his crib, changing table, dresser, and the rocking chair and ottoman all crammed into his little room. Over the weekend I sold the king bed on craigslist so we finally had space to decorate. The kids stayed in their pj's all day. We made mini-pizzas for lunch. We all thoroughly enjoyed our free day!





Hmmmm. What is this hole for?


I wonder if I could crawl down there?


Sibbling play time


So cute!



Peter's Room, it's finally decorated!


Peter loves all the extra space to play!


My little guy loves the shoes!


Seriously he really likes them!




Swimming in the tub!