TGIF!!!!

This week we....

• Had 2 Speech therapy sessions
• Had 1 Occupational therapy session
• Had our first official school session
• Learned that Olivia and Peter can crawl onto the kitchen table by themselves
• Stayed up too late watching the Olympics
• Finished and filled our 2009 Tax Return
• Interviewed 2 babysitters
• Had 2 Physical therapy sessions
• Sold some old stuff on Craigslist
• Ruined the netbook by dumping coffee on it
• Went to cheer on Mike as he participated in an wrestling tournament
• Spent 2 hours on hold with the insurance company
• Did NOT have to drive to Duke on Wednesday
• Cleaned the house too many times to count!
• Had some great phone conversations with good friends that I don't talk to nearly enough

I'm so glad this week is over. We don't have big plans for the weekend but I'm ready for a break!

Wednesday WITHOUT Clinic

Yesterday marked the first Wednesday since September that we did not have to go to clinic. We had a pretty great time just hanging around the house. The kids both slept in until after 9am (that in and of itself is a miracle). We made cupcakes, I did laundry. Peter gathered the remote controls and phones from all over the house and put them in the tub in the master bathroom and then turned the water on. I got there just in time and we were able to rescue them all from a watery death. The netbook was not so lucky. I dumped my cup of coffee on it and it's dead. It turns out that Wednesday afternoons are pretty nice, Mike gets off early on Wednesdays and he got home before 5pm! We're not due in clinic until next Wednesday and I'm realy hoping that this is the beginning of a transition to clinic every other week instead of every week.

Visiting Daddy at Work

Last week we got to stop by Mike's office and have lunch with him. The kids loved seeing his office. Both Olivia and Peter were excited to see so many people in uniform. When we got out of the car Olivia ran straight toward the legs of a complete stranger for a hug. I guess she saw the uniform and was sure it was Daddy before she saw the face. Fortunately I got there just in time. Once we got into Mike's office I was not quick enough to stop Peter from walking right over to another soldier in uniform and trying to climb into his lap. Fortunately he had kids of his own and he was completely happy to let Peter sit on his lap for a bit. I think that is one of the bittersweet aspects of military life. When Mike is deployed I hate seeing all the other guys around in uniform, it is a constant visual reminder that my husband was gone. Now that my kids are old enough to recognize that familiar uniform I have a different perspective. That uniform symbolizes Daddy and it brings them comfort even if it's worn by someone else's Daddy.

Emotional Upload

I've been so emotional the last couple of days. I hope that today's post will give me a chance to unload a bit.

Peter has reached that sweet spot where everything starts to click together in his little head. All of a sudden he seems like such a big boy. He is so coordinated. He is gaining new skills overnight. He's still not talking much but he is making more animal noises. I'm happy for him. However watching him make these developmental milestones is heart wrenching. I had heard from doctors/therapists/other parents that one day there would come a point in time where kids just start putting everything together. That moment never came with Olivia, but we're living in it right now with Peter. I'm watching Olivia struggle to regain the same skills that Peter is just magically able to do. It's painful.

Olivia seems to be feeling a lot better physically but I have no idea where she is cognitively. Now that she's moving around and feeling better she's spending more time wondering around getting into stuff. I'm noticing how short her attention span is. She's not playing with her toys appropriately anymore. She really seemed to be able to focus on an activity more when she wasn't feeling well. In the hospital she loved to color, paint, and do puzzles and she hasn't been interested in any of that stuff for months. Over the last week she has become obsessed with chewing things. Often kids with Sanfilippo syndrome have a compulsive need to chew. Up until this point we hadn't really noticed that with Olivia but this last week has been awful. She's putting everything in her mouth, and if she can't find something else to put in her mouth she will stick a finger or two in her mouth. It's awful. She has moments of brilliance followed by moments that are not so brilliant.

Of course Peter's going through his intellectual growth spurt as Olivia is having a rough week. I had a great conversation with Olivia's occupational therapist today. She noticed the difference in Olivia's chewing right away and asked about it. At the end of Olivia's therapy session we had a conversation about how God has a plan for each child. We were both in tears but it was a good conversation. I don't know what God's plan is for Olivia but it is comforting to know that one exists.

It was a really long day here, one of many over the last week. I need to find a babysitter that can provide some respite care but I've not been able to find one yet. I've tried care.com and sittercity, I'd love any suggestions!

At least the day ended well. Mike and I were talking in the kitchen when Olivia walked between us and said "poo poo" and then proceeded to pull down her pants and pop a squat on the floor right between us. Mike jumped quickly into action and she got to the potty in time to make a successful deposit. I know this might not normally be cause for celebration but I'm so glad that she is able to get her pants and pull-up off by herself now, not to mention the verbalization of her need to potty.

Mommy Moment of the Week

Rock Star

Big Day in Clinic

We had a big day in clinic on Wednesday with some very exciting news. I'm trying not to get too excited about it in case things don't work out but it's just so exciting that I can't help it. Alright already here it is......Olivia doesn't have to go back to clinic until MARCH 3!!!! I am getting so tired of driving back and forth to Duke. It's an hour and a half to an hour and forty five minutes each way. I have found a few shortcuts that help but it's a long drive.

After our clinc experience today I'm especially glad that we don't have to go next week. I got everyone up and out of the house extra early so we'd get there before 10 am because I knew we'd have an especially long day in clniic because Olivia was due for her monthly IVIG infussion and anti-pneumonia treatment. We arrived at Duke around 10 am but there was an emergency going on in the day hospital and they were trying to make arrangements to have one of the patients moved to the Emergency Room. Of course we were willing to wait while things got figured out. I'm know that others have waited while Olivia received care so it's only fair. We got into a room in the day hospital but had to wait until 11 for someone to come in and get Olivia's port accessed and her IVIG going. Peter and Olivia played well together. We sang songs, we had snacks. I knew Olivia would have to get her monthly anti-pneumonia breathing med so I was trying to delay Peter's nap as long as possible. When Olivia gets the breathing med she and I sit under this big clear plastic tent that has a huge filter blowing inside of the tent. Olivia wears her nebulizer mask with the medicing and I have to wear a big thick green mask so I don't inhale the medicine. Peter cannot be in the room during the breathing treatment so I needed him to fall asleep in the stroller so he could be wheeled right outside the room on the other side of the sliding glass door during the treatment. Fortunately things worked out. Peter fell asleep, the nurse wheeled him outside our room, Olivia and I cuddled under the tent for 20 minutes. As soon as Olivia's med finished up and Olivia got into the stroller next to Peter he woke up again. I know that God is with me during these long days at clinic. There's no way I'd be able to manage both kids without divine help!

We had to wait a bit for Dr. Paul today and our nurse practiconer is completing his 2 week rotation on 5200 so today's visit just wasn't the same. Dr. Paul was very impressed by Peter's growing skills. Peter demonstraited how to climb up and down from the toddler chair, then the regular sized chair, then Olivia's bed. It was quite amusing as he would stop and clap for himself after he completed each task. Peter then demonstrated how he can take off his own shoes and socks as well as Olivia's shoes and socks. It was too funny! Dr. Paul was impressed with Olivia's weight gain, her weight is up to 16 KG and her appetite is good. She also started drinking a little bit of regular whole milk this week and seems to be tolerating it well. Olivia's lungs sound clear and her sinuses have cleared up. We also discussed more of the 6 month study results but we're still waiting on one more test result. I'll post about all the 6 month studies at once a little later on. Around 2:00 we finally finished up and headed out of clinic.

On our way home to Durham I made a quick trip by Costco then we swung by Burger King for apple fries and chicken tenders. I resisted the burger temptation on Ash Wednesday and then we headed home arriving just before 5pm. Long day and I'm really looking forward to not making the trip next Wednesday!



"Why won't you let me sleep lady! I'm tired of your songs!"


Even Olivia was on Peter's side and wanted him to let him sleep.


Such a big boy!

Cause for Concern or Celebration?

Over the weekend Mike and I noticed Olivia going into her room and playing with the toys in her room. Peter went in and they played together for a while. It was uncharacteristically peaceful and quiet. Mike and I turned on the video monitor to watch. They were happily entertaining themselves. This lasted for almost 30 minutes. Again today while Olivia and I were in the living room during Peter's nap she got up and went into her room. She crawled up onto her bed and looked at her books and played with her stuffed animals.

I know that I should just enjoy this but I can't stop worrying about it. Is this normal behavior? Should I be glad that she's entertaining herself? Should I be concerned because she's withdrawing and it's a result of Sanfilippo syndrome? She's happily entertaining herself. I just don't know. Olivia hasn't ever really been interested in playing alone. Ever since she was a little baby she wasn't big on entertaining herself. As she's gotten older she has started to entertain herself a little more but she still tends to stay close to me. If I'm in the kitchen she'll bring her toys into the kitchen, etc.

So is it cause for Celebration or Concern? Comments please!

Academic Expectations

On Monday I went to an IEP meeting in our new school district. We finished all the paperwork to get Olivia officially transfered to our new school district. They have reviewed the copies of all the evaluations that Olivia has had over the last 6 months--the stuff from our school district in Washington, the stuff from her speech therapist in Washington, the stuff from her Birth-to-Three teacher in Washington, the Occupational therapist reports from the hospital, from the Durham apartment, from Fayetteville, the Physical therapist reports from the hosptial, Durham apartment, and from Fayetteville. I'm really happy with the teachers I've met with here in our new school district. They seem experienced and ready and willing to teach. We're changing Olivia's overall IEP from "Developmentaly Delayed" to "Other Health Impaired". Olivia's IEP from Washington state is still "good" because it was written less than a year ago but so much has changed it was necessary to rework the old one. This IEP will be valid from now until the beginning of June. Hopefully at that point Olivia will be healthy enough to transition back into a school environment so a new IEP will be necessary. The IEP goals are measurable and while some of them are challenging I think they are all appropriate and reasonable. Olivia's teacher will come to the house once a week for 60 minutes.

Thankfully when they asked me about my vision for Olivia's education I didn't break down into tears. It's getting easier to go to these meetings. I'm miles ahead of where I was during her first IEP meeting when we had just found out about her diagnosis, and her 2nd IEP meeting when she had just been released from the hospital.

After the meeting I was able to escape for a few more hours and go to my special place....Target. I love Target! I did return home with the most random assortment of items though, you could tell that I was "comfort shopping". I came home with 2 really cute pairs of PJ's for Olivia (Peter is actually the one who needs PJ's as he's a growing boy and Olivia has more than enough pj's but they were just so cute), a value pack of kids toothbrushes, a hoodie I found for Olivia for $1.50 (she needs another hoodie like she needs a hole in the head but it was $1.50!), a small pack of pull ups because I thought we were running low but couldn't seem to remember, a 3 pack of fruit of the loom panties (sexy, huh), a sports watch, 2 short sleved t-shirts, and a hot pink and blue stretchy frog for Olivia, and a box of cereal. RANDOM! This shopping experience took over an hour because I blissfully wondered through the isles completely kid free.

Weekend Highlights

• Mike has a 4 day weekend so we get a weekend "squared"
• Olivia is feeling great after a change in her antibiotic
• I got a snuggie
• Peter can drink out of a straw
• Mike and I had a fondue date after the kids went to bed
• Valentines morning heart shaped french toast
• Sleeping in
• Catching up on all of our recorded shows
• Finally watching "The Hangover" and it really was every bit as funny as everyone said it was

Mommy Moment of the Week

This week's mommy moment is possible thanks to the miracle of modern picture messaging. While I was settled in the hospital in Durham with one peacefully sleeping child I was able to text the hubby this picture of Olivia.



He responded by texting me this picture of an equally peaceful and precious Peter.



I love knowing that both kids are peaceful and content. I hope they were having sweet dreams! If only nap time would coincide this easily when they were in the same place!

Olivia Update

Thanks for all the thoughst and well wishes today. Olivia is feeling much better. Olivia slept with Mike and I last night and I'm very glad that she didn't have any more dihereah or vomiting. Olivia and I headed into Duke first thing this morning and Mike and Peter had some guy bonding time thanks to the President's Day 4-day weekend. I called ahead on our way into clinic and they had a room in the day hospital waiting for us. At first Olivia was so happy and talkative I started to wonder if I'd done the right thing by bringing her in. Her weight was down but only by a tenth of a kilo, I thought it would be much worse. The cultures from Wednesday were all negative but they did repeat all of them. Olivia's breathing was much better and her oxygen saturation was great. Her labs looked good she wasn't showing any signs of dehydration and her white count wasn't elevated. The team decided that it was a reaction to the new antibiotic that they started on Wednesday. Olivia threw up almost immediately after they started administering the IV antibiotic on Wednesday and then on Thursday the vomiting started a few hours after she received her oral morning dose. Olivia had had she same antibiotic previously but she was still inpatient and still on regular doses of anti-nausea medication so we couldn't have known that it would make her nauseous. Olivia did get 3 hours of IV fluids while we were waiting in clinic today and she was kind enough to provide a stool sample that will be sent for further testing. Olivia ate and drank plenty while we were waiting in the day hospital today and then she ate almost an entire happy meal on the way home.

I'm really relieved that she seems to be feeling better and I hope that this was just a small hiccup. I am really excited that we don't have to go anywhere tomorrow! I'm getting a little tired of the Durham commute.

Worried....

We will be making an unscheduled trip to Duke tomorrow morning and I'm feeling pretty apprehensive tonight. Olivia woke up this morning feeling great. She pooped in the potty and then had a big breakfast of scrambled eggs, bacon, and toast. Olivia had speech this morning and she helped me clean the house a bit while Peter napped. After lunch I put Olivia down for her nap. Olivia woke up from her nap feeling fine but she did have another poopy diaper. I got her a snack which she started to eat and seemed to enjoy. She started to cough a bit. Her nose isn't running at all but she does still seem to have a lot of gunk that is starting to drain from her sinuses. Her cough led to gagging which resulted in vomit. She spent the rest of the afternoon trying to cough up the mucus. She's not really vomiting, just trying to get all of the mucus out of her body. She's sleeping peacefully now and we'll head to Duke tomorrow morning. Hopefully it will just be for a few hours in the day hospital but I am packing a change of clothes for both of us just in case.....

Living the Dream

Yesterday's clinic appointment was an experience. As I was driving up to Durham from Fayetteville I noticed one of the regular radio stations I was listening too was broadcasting a telethon from Duke Children's Hospital. Great, of course I was touched but all I could think about was the extra people and the extra traffic. I wish we had left the house eariler but I pressed the snooze twice yesterday morning and that combined with the time it takes for Olivia's breathing treatment and meds left us behind schedule so we didn't leave the house until after 8:30 am.

At the hospital it took almost half an hour to find parking. They allow patients with appointments at the Children's Health Center to self-park their cars in the hospital's valet lot for $3. It's an awesome deal and the lot is just steps from the Health Center. Of course the lot was full today so I headed over to the parking garage across the street. I finally found a spot and went to unload when I realized that I only had a single stroller, I had taken the double stroller out last week when my mom was here with Peter. I went back and forth about what to do. It was very cold and I didn't want irritate Olivia's asthma right before we went into clinic, she was already having to wear the big thick green mask that makes it hard enough for her to breathe. I decided that I'd push Olivia in the stroller and Peter could walk holding my hand. It was an inexpensive, fold-up travel stroller so it's hard to push under normal circumstances. We finally made it over to the clinic but it was a trek!

We got to clinic and ran into Aiden. He had been admitted again but he was discharged yesterday and it was great to see him. It took Olivia a little while to recognize Aiden in his mask but then she got very excited to see him and told him bye bye the entire time he went down the hall then proceeded to announce to the nursing station that Aiden went bye bye.

We got settled into a room and I got busy keeping the kids occupied. We got to see Alan's dad for a bit, they are back in Durham for their 6 month studies. It sounds like Alan is doing great and I wish we could have seen him but it's probably best we didn't (more on why later). I love that you sit there for hours in a room at clinic and then everything seems to happen at once. We were there for about 2 and a half hours and then the doctor and nurse practicioners came in. The room was already hot and with the extra people it gets so crowded. I think everyone senses the chaos and tries to rush through the appointment which drives me crazy but then I just want to get out of there as well. So frustrating. Olivia's breathing was still a little fast and for the first time her oxygen saturation was a little low (92-95 when she's usually at 99-100%). After examining her they decided to put her on an antibiotic in case last week's cold had turned into an infection. Olivia was feeling fine at this point. The oxygen saturation was a little worrisome so they wanted to administer the first dose of the antibiotic via IV in the clinic over in the day hospital where Olivia could also get a breathing treatment then we could head home.

It took a while for a room in the day hospital to open up and be cleaned so we headed over around 2pm (we had arrived in Durham at 10:15). We get into a room and I give Olivia her lunchable which she inhaled along with her fruit punch. Peter is of course very happy and content as I've fed him from the minute we arrived in clinic with all kinds of snacks to keep him happy. They do a RVB (snot test) on Olivia to check for infection. I'm told these work well at identifying a number of infections including the flu and H1N1 but with Olivia's sinus issues we've done hundreds of these and have never seen one of them be positive for anything. They hook Olivia up to her antibiotic and get her breathing treatment started. Peter is content in the stroller and Olivia is cuddled and starting to nap in the bed and I am talking to Andre (the nurse practicioner in the doorway). Andre tends to come back by after the chaos of our interactions with Dr. Paul to make sure all of my questions have been answered, etc. As we're talking I think that I smell something and I look over at Olivia but she is still fine and asleep. We continue talking but I think I smell something again and I go over to check on Olivia more closely. I let out a yelp and start ripping Olivia's mask off and get her standing up because she's thrown up everywhere. Andre got into the "contact isolation" gown and gloves get up very quickly and was in our room in seconds. Olivia was okay but covered in vomit. I got her and the bed cleaned up with Andre's help and then notice that Olivia had pooped as well. They got Olivia some zofran (anti-nausea med) but not before she threw up a couple more times. Olivia does tend to throw up if she eats immediately before her breathing treatments and we were just so off our schedule that I didn't even think about not giving her food immediately before a breathing treatment. It took Olivia a while to recover and it was obvious she was not feeling well. She didn't throw up any more but she continued to have dihereah. Andre had to leave for the weekly PBMT meeting but told the nurses to page him immediately if Olivia got better or worse and he would come back to the day hospital. Olivia got some hydrocortisone via iv and that did seem to help. After 20 minutes or so she perked up and had some water and then juice and then some crackers. I was thinking that we might end up having to stay overnight and I was relieved to see her feeling better. The nurse called Andre who came back over to check Olivia out. Olivia was almost back to her normal self, she was laughing and playing again so we were discharged with strict instructions to return (or head to an emergency room) if she got worse.

Ultimately the theory is that Olivia is dealing with one of two issues. Option one is that she has a virus (they did blood clutures and the snot test) and we'll get the result on Thursday or Friday. Olivia will get a 10 day course of oral antibiotics. Option two is that she has a cold that is making her reactive airway disease worse and causing her to have more trouble breathing. With Olivia's supressed immune system it is hard for her to fight off the cold so we want to treat it more agressively than we would treat your average cold. The antibiotic should help clear up the cold and keep it from getting worse. Since Olivia responded so well to the hydrocortisone we are giving Olivia oral hydrocortisone 3 times a day for the next 3 days to help her immune system kick the cold.

I was relieved to be able to head home but then I had to figure out how to get both kids to the car. Olivia had gone through the spare outfit that I had in the diaper bag and was wearing a hospital gown with a long tshirt over it and her coat. I wanted to be able to get to the car as quickly as possible so I'd push Olivia in the stroller but then what to do with Peter. He can't walk very quickly and I couldn't carry him and push the stroller at the same time. I improvised, I loaded Olivia up in the stroller and bundled her up as much as possible. I stuffed Peter into the tiny basket underneath the stroller. After a quick stop by the pharmacy for the new meds we rushed out to the car. I got everyone loaded up into the car and Peter was sleeping peacefully before we even got out of the parking garage. Poor little guy was exhausted. It was almost 4:30 and I was exhausted by this time as well! We got home around 6:30.

It was a long day but I'm so glad that Olivia is feeling better and that we were able to go home! At one point during the day (after the vomit but before the dihereah) Andre joked that I was living the dream. While my life today certainly isn't what I would have imagined or wished for myself I AM happy. I'm exhausted, and challenged, and engaged, and living. I don't know if I'd go so far as to say I woudn't change anything, I really wish (and hope) that someday they will find a cure for Sanfilippo syndrome.

If you've made it all the way to the end of this post thank you for reading. Now you can enjoy these pictures from our trek to the car.

Chaos

Initially our day started out well. I woke up early and got my elliptical workout in and a shower before Peter woke up. Olivia slept until almost 8:30 so I got to enjoy a cup of coffee before getting her started on her meds. We all had breakfast and then I got Olivia started on her breathing treatment. The nebulizer machine is loud and I was trying to catch the news so the TV was loud. Peter was still running around in his PJ's and Olivia had her PJ top on but was naked from the waist down (potty training). So to recap, there is cereal all over the kitchen from breakfast, Peter is running around in his PJ's with a wisk (his current favorite toy), and Olivia is standing in the middle of the living room, half naked, spinning around in a circle until she gets dizzy and falls over (which happens pretty fast since the nebulizer cord gets tangled up and trips her), I am dressed but still have a towel on my head from the shower and.....the door bell rings. It's Olivia's speech therapist, 2 hours early. I'm sure someone in her office called about the time change but I promptly forgot. Olivia gets started with Speech therapy and I entertain Peter. The doorbell rings again and it's the physical therapist. By this time it's way past Peter's normal morning nap time so I put him down. The therapists do a handoff and we do physical therapy. After physical therapy I finally get Olivia her morning meds. She wants to read a book so we go into her room to read. Olivia then decided she was ready for her nap. Why not? We're having a go-with-the-flow day, right? The kids sleep for about an hour while I try to regroup. They get up and I make lunch. By this time Peter took a very long morning nap so I know he won't be taking an afternoon nap. Olivia rested in her bed for about 15 minutes but spent the rest of her naptime playing with her books. The house is a disaster so I try to pick up a bit. I go from room to room attempting to straighten up while I have two little tornadoes following behind me, completely counter productive. At one point today I was making the bed in my bedroom and the kids were "playing quietly" in the bathroom. I turned to find Peter dragging a toilet plunger around and Olivia eating my lipstick. Turns out Olivia had applied quite a bit of makeup. Rather than try and get her all the way across the house to her bathroom I just decided to give both kids a bath in my tub. So what if it's only 4pm. There's no point in getting dressed so I just put them in their PJ's. See pictures below. I was set on getting the floors moped and Peter decided it was his mission to give himself a concussion by running on the wet floors. The boy was almost airborne before he smacked the back of his head on the floor. You would think that he would learn after his first fall but then he sat up, cried, then got a big grin on his face and hoped up to do it again. I didn't have a plan for dinner so I improvised and created some type of pasta/sausage meatball/cheese casserole that the kids both loved. We spent the entire day in chaos from the moment Olivia got up until the second she went to bed and I am very glad that this day is over!


After her bath this little girl laid on the bed and was slapping her own behind and saying "night night." I have no idea where she learned this! I can almost hear all of my friends snickering as I read this but really! Where does she learn this stuff?

This handsome boy is getting to be such a big boy!

Sugar, It's what's for breakfast around here

Managing Olivia's dietary needs is getting easier. Her appetite continues to improve and it seems to be stabilizing. Instead of snacking constantly all day long she is now back to having 3 regular meals and 3 snacks a day. Olivia is also starting to be interested in more normal foods. In other words we're slowly starting to introduce foods other than potato chips back into her diet. I am still trying to up Olivia's calorie intake and I sneak extra calories into her diet whenever possible. Unfortunately Peter is also getting to experience all of the negative aspects of Olivia's new high calorie diet. He had some of her Trix this morning for breakfast. Can you say sugar rush!!!!!!!

Monday, Monday

We meet again. We had a great weekend, I dreaded the end of it but I'm ready to get back into our regular routine.

Mike got home early for work on Friday which was such a nice change! My mom left on Saturday after being here for almost 2 weeks. It was so nice to have her around to help. It's the longest period of time that she was able to visit and it was neat to watch her relationship with Olivia and Peter grow over the 2 weeks she was here. On Saturday night I escaped from the house for a few hours to play Bunco with our neighborhood group. It was nice to get out of the house for a bit. Sunday seemed to drag on as we waited to watch the big game. I can't believe I was crying for the last 5 minutes of the game. I'm just so happy for all the Saints fans out there. The Saints success this year means so much to the city of New Orleans.

Stowaway

My Mom left and had a long trip home. With all the snow in the north east I'm pretty sure that most people traveling today had airport issues. Her initial flight was scheduled to leave North Carolina at 11:30, and after a quick stop in Orlando she would have been home at 2:30 EST. Instead she left North Carolina around 12:30 flew to Orlando, flew to New Orleans, and then finally flew to Houston, she finally got home around 7:30 EST. I know she's glad to finally be home!

We loved having her here. She was here for 2 weeks but the time seemed to fly by. The kids both really enjoyed having her around. Olivia has decided to rename my mom "grandma" which is much more appropriate the previous nick name that Olivia had given her (Olivia called my mom "pop pop"). We all loved having my mom around and we'll miss her!

Mommy Moment of the Week

Olivia loves having her picture taken recently. I love how content she is to pose for an impromptu morning picture with mommy. I look terrible, did I mention it was an EARLY morning picture. Still worth it to see that smiling face.

School Time

This week started off horribly but it's ending on a great note. On Friday afternoon we met with the itinerant teacher here in our school district and one of the occupational therapists. They were fantastic. I'd given them some website links where they could learn more about Sanfilippo syndrome and the teacher came with pages of printed out material and questions. After all the advocating I've had to do it's nice to meet others who are stepping up. We had met such a wonderful group of educators in Washington, I was so nervous about meeting people here in our new school district. Olivia's IEP was written in Washington state and then I thought that we had updated it in Durham county through the Durham Hospital School. It turns out that it wasn't really updated correctly. I think that the hospital school does a good job of providing services on an interim basis but it's become pretty obvious that they weren't really sure what to do with Olivia's IEP. Basically we're having to start over, using the real IEP from Washington. We talked about Olivia's goals and then I gave them copies all of the evaluations that we have. We also talked about the fact that I refuse to have Olivia go through another series of developmental tests for at least a year. Over the last year Olivia has had developmental testing in one form or another (the Mullen, the Peabody, the Battelle) so many times that I don't think any of the results are valid at this point. She was tested in March, evaluated again in April, then in May as part of her IEP creation, in July by in-patient therapists in the hospital, in October by therapists when we went outpatient who provided services in Durham, in December by therapists when we moved here to Fayetteville, and again this past week at UNC. That's 7 times in the last year. They agreed to just use all of the other evaluations rather than evaluate again. I refuse to accept the "we need to have our own record" line any more.

Olivia wasn't super cooperative today but she did warm up to the teacher and by the end of the visit she was happily sitting in her lap. With Olivia's busy therapy schedule it will be difficult to fit in school time as well but I think she'll be able to have school time at least once a week starting next week. I'll have to go to another IEP meeting in a couple of weeks but then we should have things in place for the rest of this school year. I am really looking forward to the 2010-2011 school year when Olivia will hopefully be able to attend school rather than having to have home based therapy and instruction.

Date Night

Funny how much date night changes as your family grows. When Olivia was younger we still had frequent date nights. Of course we didn't stay out as late as we did pre-kids but we still stayed out pretty late. We were fortunate enough to have a built-in babysitter since my mom is still here. Getting ready was crazy hectic. The kids destroyed the bathroom in the 10 minutes that I was trying to get ready. Peter shoved so much toilet paper in the toilet that I had to plunge it. Sexy, I know, nothing says date night like plunging a toilet. I looked at the clock and noticed it was 15 minutes after Mike had said he'd be home, I was sure we might end up not going after all but I remembered that it was Thursday and The Real Housewives of Orange County was going to be on and I cheered up a bit. Mike did end up coming home after all. We gave Olivia her meds and put her down a little early before we left. I was in such a rush I forgot to wear my wedding rings! We went out for a fantastic dinner at a great restaurant in an old restored house in downtown Fayetteville. We had a great time and we were home by 10 pm. Wow, things have changed.

Snow Luge, Leiva Style

In celebration of the Winter 2010 Olympics I'd like to present Snow Luge, Leiva Style.




We got rid of the majority of our winter play equipment when we moved "south". We don't have a sled but we managed to improvise. The kids seem to enjoy it and I think it might actually be safer and warmer for them then an actual sled. The rest of east coast seems to be preparing for the Blizzard of the Century but we're just getting rain here. We did get quite a bit of snow/sleet last week and we all had fun playing in it.

Prayers and Peace

Thank you all so much for your prayers and kind words. I didn't sleep well last night and woke up this morning still upset over our appointment at UNC. We had a day full of tests scheduled at Duke and I was dreading the long day. Olivia woke up happy and willingly provided a urine sample for us to bring into the clinic today. She was so proud of herself and I felt our day starting to turn around. Olivia asked for pancakes and bacon for breakfast so we ordered room service and shared breakfast in bed. We headed off to clinic and they drew Olivia's labs and we went over our schedule for the day with the nurse practicioner. There had been some schedule changes so we would be able to get all the tests done today instead of having to spend another night in Durham. I was thrilled, after our long day at UNC I was just ready to get home! We headed down for the echocardiogram. This was Olivia's 3rd echocardiogram (the first was part of her pre-transplant work up, the 2nd was done at the 100 day mark). Olivia was very still, we sang songs. Olivia particularly enjoyed a very intersting version of "Old MacDonald" where she chose to include a random assortment of animals. There were your typical farm animals along with a frog, a tiger, an elephant, and a giraffe. Olivia was so still that the echocardiogram was over very quickly and we were on our way. Our second stop of the day was the chest x-ray. Olivia is such a pro at these that she sat very still all by herself. When she was finished she hopped off the stool, said thank you and asked for a sticker. We headed off to her puliminary function tests. These are difficult as they require Olivia to blow into a mask. We've been working on blowing for years and Olivia still hasn't mastered the concept. She tries so hard but just can't quite get it. Sometimes they can get the test results when she cries but Olivia just wasn't in a crying mood. It looked like Olivia had very poor lung function. I knew that we weren't getting accurate results so as I was holding her I very deliberitly, cautiously, pinched her. I know, send me that mother of the year plaque now. It worked like a charm though and Olivia's lung function numbers shot way up as she let our a loud yelp. We were able to finish the test and since Olivia didn't see me pinch her I guess she forgot the whole thing. She got another sticker and we were on our way. I had to run back to the hotel and pack up and check out before our next appointment. The hotel was great about letting me check out a day early without any notice and we headed back to the hospital. Back in the clinic we got great news from the nurse practicioner. Olivia's labs looked fantastic! Her echocardiogram actually showed improved function compared to her pre-transplant test. Olivia hadn't had any heart issues prior to transplant and her heart was working perfectly! Her chest x-ray was absolutely normal. There wasn't any reason for Olivia to see a doctor today which will mean that that this is the first week since discharge that Olivia has gone 2 weeks without seeing a doctor. Hopefully this is the first step for us getting down to clinic visits every other week instead of every week. We will discuss all the test results from the 6 month studies with our primary physican next Wednesday. We finished up in clinic and Olivia and I headed down for a picnic lunch of sandwiches from the gift shop. After finishing up lunch we headed up to the EEG lab. Olivia was very well behaved as they hooked her up. They went to start the EEG and Olivia snuggled into my lap and fell asleep. We both actually took a nice little nap and the whole thing was over before we knew it. We left Durham around 2:30 and got back home just after 4pm. It's really nice to be back home.

Olivia had an amazing day, everything seemed to go so smoothly. I know that God was with us every step of the way. I could feel your prayers and well wishes washing over me again and again. I wish that the doctors from UNC had seen Olivia today. In the midst of all of our moving from appointment to appointment I felt peaceful and that in and of itself is a miracle to me.

Here are some pictures of Olivia with her EEG wires. Olivia was very still while they hooked her up and then she happily cuddled up and slept during the test. It was so much easier than her last EEG in October. Peter was with us during that EEG and I had to keep both of them occupied during the test and keep them both from trying to rip off all the carefully placed leads. I'm so glad that my mom was here to watch Peter.

Anger and Tears

To say that today was a long day is a drastic understatement. I am drained and I seriously contemplated just going to bed with Olivia at 8pm but I think that writing a little about our day will help me feel better. I thought that I was prepared for our appointment today at the Carolina Institute for Developmental Disabilities. Our first appointment there last April was hard experience. It was the first time we were really given information about Sanfilippo syndrome. It was good to get the information but terrifying and heartbreaking to hear. I went into today's appointment knowing that I am the mother of a child with special needs. I thought that I was in a good place, ready to get information, ready to gain insight. I really thought that we would hear good news. In so many ways I think that Olivia has made such huge improvements. She's talking now! Granted she's using 2 and 3 word sentences but she has hundreds of words. She can share her needs and some of her feelings. She sings some songs and nursery rhymes now, she knows the days of the week, she can count from 1-10, she knows her colors and her shapes, she can string beads on a shoe lace. She has favorite books and characters. Cognitively I had thought that she was miles ahead of where she was last April. I was prepared to hear that she had regressed physically. She was laying in a hospital bed for several months and she's been on some high dosages of steroids that weaken her muscles. I knew that we still had a long way to go to help her regain her pre-transplant skills. I thought that they would be impressed with all that Olivia has learned since we were there last April.

The day began with some developmental testing. I went into another room so that Olivia could work with the developmental testor. The test went terribly! Olivia didn't mind tat I'd left the room but it was impossible for the administrator to keep Olivia occupied and engaged. Olivia didn't place things in a cup, she wouldn't stack blocks, she wouldn't nest cups, she wouldn't follow simple instructions, she couldn't point out her body parts, she couldn't point to something in a picture or lable anything, in fact I don't think there was a single thing that she did do correctly. They didn't get very far in the test because Olivia seemed so unable to complete a single task. She was putting everything on her mouth which she only does when she's stressed and uncomfortable. It was awful and painful to watch. Olivia did better with the physical therapist. They were able to at least get a good idea of what Olivia's physical limitations are. We had to wait for almost 2 hours for the doctor to come in for the physical exam. For the most part Olivia did well during the exam but by this point it was almost 2pm and Olivia still had not had lunch. She was cranky and tired of being in the exam room and she started throwing things and hitting me. She just started hitting during the last week or so. She seems to do it when she's tired or bored or just trying to be playful. It isn't hard but it is strange to see this aggressive behavior from her. She only does it with me so I thought it was just a behavioral thing, she's mad at me for giving her less attention so she was physically trying to get my attention. At 2:15 they finally let us go grab a quick lunch before we came back to get the results.

Olivia and I went into a sandwich shop (her first experience in a restrauant since before her transplant). The goal of today's appointment was to determine if Olivia had regressed since her transplant. I was expecting some regression in her fine and gross motor skills but I was expecting huge improvements in her cognitive comprehension and language expression. By the time we got back into the very same exam room where we'd spent the first 4 hours of the day Olivia was exhausted. It was well past her nap time. She was sick of being in that room (as was I). She was tired of the toys I had brought to entertain her and there was not a single toy or entertaining object in the room. She wasn't hungary because we'd just eaten. Olivia threw things, she wandered around the room constantly, she wanted to be held, she wanted down, she wanted to pull my hair, she hit me, she threw things at the doctor, she emptied the entire diaper bag, she played with the mini-blinds, she got up and tried to leave the room at least 4 times. While Olivia was roaming around doing her best interpretation of a category 5 hurricane. The doctor and her nurse practicioner calmly, rationally told me every single behavior or new ability that I thought represented cognitive growth and development was really a sign of regression and disease progression. They seem like nice people but at that moment I hated them, I hate Sanfilippo syndrome, I hate that I don't get to know what kind of person my little girl is because she has this terrible disease. Then the tears came and they're still comming by the way, this better be theraputic!

They said that Olivia may know more words but she doesn't understand the meaning behind them, that she uses them randomly without purpose. They determined that she was at the exact same level that she was last April. She scored higher on expressive language but lower on receptive language so it canceled eachother out. Cognitively they determined that Olivia is at approximately a 15 month level. OUCH!!!!!!! I know in my heart that Olivia is far beyond this but it's a standardized test and she just didn't perform well. When I mentioned the new skills that Olivia is doing, lacing, stringing beads, etc. They said that kids remember the skills that they learned most recently and that while those are closer to age appropriate skills she has "lost" other more basic skills like stacking and sorting. I don't know if she really cannot do these things or if she just didn't want too. We haven't practiced these old skills lately, we'd been focusing on new ones. They didn't even get to the portion of the test that would test for these new skills because Olivia performed so poorly on the initial part of the test.

Then it got even worse. They went on to say that Olivia, like many other kids with Sanfilippo syndrome, is beginning to exhibit some autistic behaviors. Not that she has autism but that often kids with Sanfilippo syndrome exhibit some autestic tendencies. Olivia's wandering and roaming around the room for example. They noticed that Olivia also seemed to not display empathy. They sited the time Olivia hit the doctor with her rubber mallet and laughed and Olivia's frequent hitting. They said that she wasn't able to demonstrate care and compassion. Of course at this point I was crying and Olivia crawled into my lap for a hug and a cuddle. They said that she's not comforted by physical interaction and would prefer to be alone. They said that kids would normally want to engage with the tester during the developmental test but that Olivia didn't want anything to do with her.

It was really tough to hear. I still have so much anger that I can't really process what happened today. I know that Olivia can do better but at the same time it was a standardized test and I understand that she does need to be able to perform certain tasks when asked to perform them.

I finally got a chance to talk to Mike about our day. He made me feel much better about it. I know that I take a lot of this stuff personally, I don't know how you can not take things like this personally but Mike is great at helping me maintain perspective. I feel better after the venting but it was still a rough day.

Girl Time

Olivia and I are headed to Durham for a couple of days while my Mom, Peter, and Mike stay in Fayetteville. It's time for the long awaited 6 month studies and with the weather and icy roads I'd much rather be in Durham instead of driving back and forth. Olivia had a series of tests at 100 days post-transplant and she'll be repeating some of those but she will also have several more tests to determine what impact the chemotherapy had on her. She went through these same tests prior to her transplant so we will be able to compare today's results to the pre-transplant results. I'm most looking forward to her visit to UNC's Center for Learning and Development. Our appointment at UNC last April was rough. We got some great information but we also got a more realistic picture of having a child with Sanfilippo syndrome really means. We will got to UNC Tuesday and then the rest of her tests are at Duke on Wednesday and then we'll be leaving to head back to Fayetteville on Thursday after Olivia's EEG. I think Olivia is enjoying the girl time and I'm trying to just focus on enjoying this time with her instead of missing my boys and my Mom back in Fayetteville.

Keep us in your prayers as I HATE driving in wintery conditions!