Updates

 

 

5-23-08
In the next two weeks we will be making a trip to Duke University Medical Center for Alyssa to undergo an Umbilical Cord Blood Transfusion. It will take 4-6 months for everything. The evaluation takes about 2 weeks, and we add on another 10 days to remove her tonsils. They will draw blood for HLA typing to be able to pick a donor.  The blood work results takes about 7 to 10 days.  The search for the donor takes about 10 minutes.  After multiple units are picked, they have to have them tested for Hurler as well. Then Alyssa will have a central venous line placed in the operating room and be admitted directly to the Pediatric Blood and Marrow Unit (PBMT) in Duke North. After she gets her central venous line and is admitted to 5100 the PBMT unit, she will have 9 days of high dose chemotherapy to destroy her immune system and blood system.  On the tenth day she will receive her unrelated cord blood transplant and the she will be in the hospital for an average of 50 days.  After discharge, she will stay in the area apartment and will be seen in Duke clinic beginning daily, then several times a week, then weekly until Day 100.   On Day 100 from transplant, she will repeat her heart, lung tests and if no complications from transplant, then Duke will begin to arrange for her return home to be seen there and reports sent back to Duke. All of these days are averages.  It will all depend on her clinical course.

Please continue to keep Alyssa in your thoughts and prayers. We will be updating as soon as possible.

5-26-2008

Lee and I received an email today from Duke, looks like we will need to b there on the 9th of June.Alyssa's two week evaluation period will begin on June 10th. We will find out the exact schedule for all of the testing. We're lucky Duke has been so quick to respond in organizing our trip as soon as possible. Alyssa is doing great, over due for a nap and riding on the mower with her PawPaw. =)

5-28-2008

Renee Lewis owner of Renee Lewis Photography volunterred to take some photos of Alyssa in Shelbyville. Renee volunterred through a family friend, Tammy Rannells. She did such a wonderful job, and was much nicer than any photographer we've ever met. Look on this website, and also watch the slide show for our pictures. Thank you SO much Renee & Tammy, the pictures are PERFECT!

06/02/2008

 

 

 

 

June 8,2008

Well we are leaving out tonight around 11. Today trying to get everything packed and ready. Wish us luck and keep us in your prayers. We will be here at Dad's til then.

 

June 9th,2008

After 9 long hours in the car, we made it! Alyssa did really well, granny bought her a dvd player to watch on the way and the "throne" of car seats that she absolutely loves! We stopped this morning with Nana and PawPaw and ate breakfast at Cracker Barrell. We managed to scope out the area to see where all the buildings are that we will need to find for Alyssa's appointments. We got some swimming in and a little more Dora, and she called it a night. June 7th we had a gathering at Lakeview Park in Frankfort. I want to thank everyone for comming out and showing their support, it was great to see everyone before we left. We also want to thank everyone who has donated. We can't express how much we appreciate it. Here are a few pictures of the trip and from today. Enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6-10-08

 

Today was a fairly busy day. Alyssa had an 8:15 appointment with Cardiology. They did an echo and an EKG. We then met with the doctor to discuss the results. Alyssa has mild heart thickening...which is normal for a Hurlers baby. Once the transplant is over, and her cells grow, this could get better. Another appointment at 10am at the Pediatric Blood and Marrow Transplant clinic, there we discussed Alyssa's medical history and added a few things. She also discussed with us the spinal tap that they will be performing later this week. At 4pm we met our doctor, Dr. Vinod Prasad. He talked to us about Hurlers, and a little about the transplant procedure. He really impressed us. His confidence in what he does, is amazing. We all feel that Alyssa is in the very best of hands. We will continue to meet with him through out this evaluation process. Once all the evaluations are finished,  he will go over all the results with us too see if there is anything we need to do before her transplant. We have a few appointments tomorrow, so we'll update again soon.

6-11-08

Today started off with a 9:45 appointment with the Ear, Nose and Throat doctor.  Following that was a 1pm appointment at the Pediatric Blood and Marrow Transplant clinic. They got her vitals and took half of the blood needed, since they need a great volume. Those were her pre-transplant labs. They did a viral battery (quick nasal wash) as well as a rectal swab. This was for a pre-op. Luckily both Alyssa and Lee were sleepy, and napped on a "couch". The portable DVD player Granny got for Alyssa has been a LIFESAVER! During the time period from the morning appointment to the afternoon appointment we found a mall! We strolled Alyssa around and managed to find a train ride as well as a Merry go Round. She absolutely LOVED it! I'm going to add a few pictures from today as well as from yesterday. Since we've arrived, Lee's parents have been here with us, unfortunetly they had to leave this morning and will be back as much as possible. We had such a wonderful visit with them, and of course they are adored by our little one. We would like to thank everyone for their support, we never in a million years saw this coming, and would have never expected it. Thank you for all your kind words in such a hard time for not just us, but all of our family. God Bless.

 

 

 

 

June 12, 2008

Today started off with a developmental evaluation, which made me a little nervous. It took a couple of hours, but overall went well. They said Alyssa had very very mild cornea clouding, which is excellent! She is such a smart little girl. She scored about a 75. The doctor said it could be in the 90 range if Alyssa could actually talk instead of just the few words she says. The doctor also believes that this is caused by a hearing problem. Alyssa will probably need tubes put in her ears to make this better. Of the few hearing test's that Alyssa has already completed, state that she has some trouble hearing mono tones, so its definetly being looked into. Duke has been so wonderful to us, they are all so nice and knowledgeable. At 1:30 we met with our nurse coordinator for an education session. Basically we went over some of the procedure, the do's and don't, and also that she will be emailing us a number of someone to speak with who has a child that has hurlers and has also been through the same program as Alyssa. How great is that!? At around 3:30 we met with our social worker, who is close to amazing! She basically got some background information and talked with us about things we might need. Like I said, everyone here has been wonderful.We are so lucky to have Alyssa, she is absolutely the best little girl in the entire world. She teaches us new things everyday, and we couldnt ask for much more. Alyssa only got a 30 minute nap today, so if you could imagine, she is wore out! She went to bed around 9pm tonight after we came home from getting dinner. This is what exhausted looks like!

 

 

June 13, 2008

Alyssa is offically 15 months old today! =) Today started of early at the CHC. (Children's Health Center) Alyssa had the rest of her pre-transplant labs drawn, luckily we had the same nurse as the other day and she got it with one stick. These nurses are wonderful. At 9:40 we had an appointment for Alyssa to have a Crying Vital Capacities, a study of lung fuction. That went well. Around 12:45 our nurse coordinator took us on a tour of the Pediatric Bone Marrow Unit. It looked really nice, but it really made me sad to think Alyssa would have to spend at least 50 long days there in such a tiny room, going through so much. After that we met with Alyssa's doctor, he went over the evaluations so far and stated that Alyssa will need her tonsils and adnoids removed, as well as tubes in her ears. We all figured as much, and it's good we are getting this out of the way. The hospital is having some issues with the insurance, hopefully that will be worked out soon so we can get to this some point next week. Thats basically all for now, Alyssa and Daddy are taking a nap, and then Im sure we'll go grab some dinner. We finally found Target today, but still no Duke shirt. We have the weekend to relax so we'll keep looking during the weekend. If you haven't checked it out yet, the State Journal did an article on Alyssa. If you would like to read it, it's here: http://www.state-journal.com/news/article/3940192

We just got back from eating dinner at TGI Friday's. The first time we had a waitress who paid so much attention to Alyssa, and she loved it. She wasn't our waitress tonight, but we did see her and she immediately remembered Alyssa. She played with her for about 10 minutes. Most of you know that Alyssa isn't fond of people she hasn't been around a lot...well Alyssa took right to her, her name is Tiffany. She is too sweet, and Alyssa really enjoyed her company. Here are a few pictures of tonight, and Alyssa with Tiffany.

 

6/14

Today was mostly a relax day.....finally. Laura went laying out while Lyssa and I went swimming again. Then came a nap for all of us which we all needed. Alyssa had her first trip to Chuck E Cheese tonight. It was kinda busy but enuff for Alyssa to have alil fun. Then we drove to the mall for a while to just walk around while it was raining. We are trying to get her out as much as possible because once she is in treatment, she wont be able to go out for a LONG time. Here are a few pics of the day..Enjoy...

 

 

6-15-08

Today we didn't do a whole lot. We went to Walmart, got baby food and stuff. Lee had to get two new tires today. Seems last night he found a nail in his back tire, we tried at two places to get it plugged but since it was so far on the outside they wouldnt. So...two new tires later Alyssa was sooo tired. Once she got a good nap we got her in the stroller and found a Dick's sporting goods, we've been trying to find a Duke shirt for Alyssa and still no luck. We went out to dinner, and gave Alyssa a taste of lemon. She's tasted it once before, and we didn't get this kind of hilarious reaction. We're going to include a video from today at dinner with the lemon. Try not to laugh too hard. =)

 

 

 

6-17-08

Sorry we are just getting a chance to update again. We usually update at night after Alyssa goes to bed, and last night that wasn't until midnight. Yesterday Alyssa had her CT scan and thankfully did not show a concern for brain fluid. They will still do a spinal tap at some point to check the pressure to know exactly for sure. That whole event went well, the pediatrician there would not sedate Alyssa as something when Hurler patients are sedated they have trouble breathing and because her adnoids and tonsils haven't been removed yet they only gave Alyssa some medicine that made her woozey. And it certainly did just that. The doctor said it's like having a few drinks. She stayed still enough for them to get it done, so that was awesome! That's better than her being fully sedated anyhow. Then we met with our Insurance Coordinator and 2 people from the Family Support Team.
Today Alyssa had a hearing test this morning, everything showed okay except for high pitch sounds. Once they got so soft Alyssa was not able to hear them. They did a nerve check and found that it was permanent damage. Once Alyssa has her tubes put in (which I will get to in a minute) they will fit her with a hearing aid. Which isn't that bad, my way of looking at it is that it could alway be worse. After that appointment we went to her Orthopedic apt, and that went pretty well. They didn't see anything that alarmed them. She's been a little fussy today, but I suppose after 2 weeks she's allowed one bad day. hehe. Lately, she likes our bed more than hers. Seems she wakes up anywhere from 2-5am, once we lay her with us she snuggles up and goes right back to sleep. This is a habit we never wanted to start, but with all thats going on she's welcome in our bed anytime! =) About the tubes, they have pretty much rescheduled everything. Alyssa will have her adenoids and tonsils removed, as well as have her tubes put in Thursday morning. She will have to spend the night in ICU so she can be monitored more often. They said babies with Hurler's usually spend the night there because their airway is so small, that it's good to monitor incase she needs some oxygen. Some of you may know, last weekend my parents and family set up a fundraising yard sale in Frankfort, I just wanted to thank everyone for their help, prayers, kind words and donations.

 

6-19-08

Today was surgery day! We arrived at Duke at 6am this morning, got checked in, signed papers and was told a little of the procedure. They told us that children with Hurler's sometimes have trouble with the anesthesia... and the oxygen tube can create problems. Since Alyssa was sedated at Kosair in May we weren't too extremely worried. We went back with her until she had to be sedated, they allowed one parent to go into the OR until the sedation was complete...I couldn't do it, I know from experience at Kosair that I just can't handle that. Lee knew it would be hard to leave her, but he went. After an hour and a half of waiting they came out to inform us that the surgery went great! Some of the best news we could have gotten. She is currently in PICU until tomorrow, and then she will go to a different room in pediatrics. She needed a little help after surgery with oxygen, they just have a hand held blue tube that releases the oxygen and we just hold it close to her face and the level keeps up. For a while we had to keep her awake because when she would fall asleep her oxygen level would go low. We stayed with her for a while, but the room is so small we we're just in the way. We are back at the hotel now, we will get something to eat and head back to the hospital. The nurses there in PICU are so wonderful! NaNa and PawPaw got here last night a little after 8. Alyssa (and all of us of course) were so happy to see them. We did get an apartment about 4 miles away from the hospital that we will be moving into this weekend sometime. My parents will be comming into town on Friday, so we're all happy about that! We will update later on how Alyssa is doing and maybe add a few pictures from today =)

10:00pm

We miss Alyssa so much! It's so weird not having her here tonight. We've been to PICU again twice tonight to spend time with her. I called PICU a little bit ago and they said she was doing really good, she was getting some rest when she's not watching Dora...imagine that! haha. They gave her some morphine to help her sleep, so we've decided to just see her in the morning instead of seeing her and making her upset for the night since we cannot stay with her over night. We gave them our number and told them if she became inconsolible tonight to call us and we would be there in a matter of 5 minutes. Im going to include a few pictures of today, one right before her and daddy went off to the OR and a few after surgery. She was so happy to see Nana and PawPaw last night, and today. We're so glad their here to visit us. Thank you for all the prayers on her surgery, we're so happy everything went as well as it did. It's hard to see her this way, but we know it's only for the best. My parents are on their way, we're excited to see them and I know Alyssa will be too.

 

6-21-08

A big sorry for the delay in updates! We are slacking. Things have been SO busy. Alyssa doesn't get to come home today. (She's finally napping!!) Last night her oxygen level kept dropping in the 80's, so she has to stay 24 hours extra without it happening again. She seems to be feeling much better. Yesterday she took her bottle a little, but the pain medication she was given through her IV was making her nasiated, and she spit up juice twice. Today she actually ate some applesauce and when she wakes up Im going to try for a little more. Last night Lee stayed all night here at the hospital with her while my mom and I organized our apartment and did laundry. It was so great to spend some time with her. It's so nice to be out of a hotel room! Lee is home taking a break, my parents stayed here for a little while today with Alyssa. Lee's parent's went home this morning. It sucks that they really didn't get to spend a lot of time with her due to her being hospitalzied. Which was kind of out of the blue, we knew only 2 days in advance when we  had been going by a 2 week schedule. They took her IV out last night, which is great. She's had 2 fevers since surgery, but the doctor said since they removed so much tissue it was okay, since her body is only doing the natural thing in this situation. Not much else going on, just hoping that Alyssa can come home tomorrow. She's pretty much back to herself, clapping and watching Dora. =) We'll try to add some pictures later when we get a few more minutes.

Update: Thought you guys would like this. Alyssa's bath time

 

June 22,2008

Alyssa is FINALLY HOME. We are so happy everything went well. She has a check up appointment in the morning then an eye appointment Thursday. More to come later.

6-23-08

It's so good to be home! Alyssa still is feeling under the weather. She's been pretty cranky and really not eating much, but we're making sure she stays hydrated. At least she's been sleeping quite a bit and getting her rest. She's on antibiotic ear drops, as well as oral antibiotics, and Ibuprophen every 4-6 hours. We've just been taking it easy, finishing laundry and getting everything else un packed. Over all we really like the new place, no complaints yet!  We had a follow up "in clinic" apt this morning, and the doctor said that everything looked well. She isn't breathing as loud, but her throat is still a little swollen, so it will get better. Tomorrow we will try to upload some pictures, she hasn't been feeling well so we haven't been taking many.

6-24-08

Finally getting some more time to update. It's just been she and I today, Lee had a misfire problem with his car and was gone most of the day getting it fixed. It's always something! She's been such a rebel today haha. She gets it honest =) She still isn't eating much at all, except vanilla pudding... Im starting to think she's tricking us. hehe. Im going to add a few photos, most from the hospital and one of her asleep in her bed the day we came home. Getting her to take medicine now is a major choir, before all this she would gladly take it.

 

 

 

 

6-25-08
Finally...I can say we had a decent day lately! Alyssa was up pretty much all night crying and there was nothing we could do for her. This morning Lee called the nurse coordinator to see if we could get her an "in clinic" apt to have her checked to make sure everything was okay. They actually got us in really quick! They said everything looked good, but that Alyssa may be in some pain. She still is not really eating anything. She shared some scrambled eggs with me this morning, and thats it. But she is staying hydrated so I guess she'll eat when she's ready. They gave her some Tylenol with Codine right there and said if it made a difference they would give us a prescription. Not 15 minutes later she was walking... BY HERSELF!!! She's taken a few steps here and there, but nothing like this! She just took off! She walked a little tonight but nothing more than walking back and forth from me to Lee yet. The T3 is helping tremendously! It's like having our happy girl back; Well, for the most part. It's about 9:23 now and she's asleep. She had such a good day that she didn't feel the need to nap. haha. Tomorrow morning we have an eye appointment to test vision, following that we have the other hearing test to see how much the tubes have corrected her hearing and if she will need fitting for the hearing aid. After that we will meet with our nurse coordinator for an education session. Here's a couple pictures from today, one is her bath and the other is from the doctor's office today, enjoy!

 

6-27-08

I am happy to write that Alyssa was herself today! =) For the most part you could tell she felt 100% better. We even cut back on her pain medication until bedtime. Alyssa had her eye exam today and she was just one line below normal, which is pretty good for age and to have Hurlers. The doctor noticed a little cornea clouding, she will take a better look at some point when Alyssa is sedated for either her MRI or the LP, (spinal tap) We had another hearing test today to see how much good the tubes did, her hearing was a tad better but there was still some sounds she couldn't hear that were similar to the last test. They molded her ears for the hearing aids and we should get them in within 2 weeks. Im very excited about this, I hope once this happens she will be able to talk a little and at least fully understand what we say to her. Other than the low high pitch sounds she does really good. Now when you tell her no she will look at you like you're insane and shake her head "No." She has the cutest personality I've ever seen!!! We also had an education session this afternoon with her nurse coordinator, we have a few more procedure's to complete. If there are no more issues, we are looking at chemo starting on July 14th. As ready as I am for the procedure to start, we are also terrified. We only hope this makes her better, and this is the best choice for her. We have so many friends and family, and people that we have never met standing behind us, and it's so amazing. We'll try to update with some pictures tomorrow now that she's feeling better. We have an apt with Alyssa's doctor tomorrow, basically it's just an exam for him to look her over since the surgery. That's it for tonight!

6-27-08

I am sad to say that Alyssa is back in the hospital. =( This morning while drinking her bottle she coughed up a little blood. We contacted our nurse coordinator and she said that a small amount was normal, due to the tonsil scabs coming off, and that it was about time. During the day she did wonderful! We had a 3pm apt with our Dr, so we get there and while Lee checks in I go take a seat with her and give her a bottle...well guess what happened!? She started screaming and bleeding pretty bad, they rushed us back and our doctor came right in, took a look and stated that part of her "scar" wasn't healed and she would need to undergo surgery immediately to close it back up. For being so terrified we held ourselves together pretty well. He said that although this isn't common, it does happen. When it rains it pours, what can I say? The surgery went well, the ENT doctors told us that it was a small spot on the right side that was open. We didn't get to be with her while she was sedated this time, but we got to walk her to the doors and give a quick kiss. Those "goodbyes" are the hardest. It nearly broke my heart. All that matters is that things went well. She woke up okay in recovery and we got to stay with her, they moved her back to the bone marrow unit where she will stay tonight and hopefully come home tomorrow if all is well and no issues. She's been awake, and in a decent mood considering the situation. They gave her some pain medication to help her sleep, hopefully she will get rested and fell much better in the morning. I will update as soon as I get more news, hopefully good news!!!

6-29-08

What a busy weekend! We are still in the hospital. Alyssa has done really well, she did have a little bit of bleeding yesterday, probably caused by her bottle, so until further notice, she doesn't get one! The doctors say she should be able to come home tomorrow. They just want to make sure she doesn't have any more bleeding. Lee stayed with her last night and I am staying tonight, he is at home now getting some rest. This place will wear ya out! Even these 3 days have made me wonder how in the world we will survive 50!!!!! Looks like my mom will be flying out tomorrow, just in time! =) Here's a few pictures for now.

 

 

 

 

 

 

 

6-30-2008

Unfortunetly we did not get to come home today. I got a little...okay alot, upset because last night and also early this morning two different doctors told me that she could come home in the morning, well at about 11am our nurse came to let us know they changed their minds! =( They said they needed to monitor her to make sure she did not bleed anymore. Which I do understand, but she hasn't bleed at all since friday, and has eaten and drank. A different doctor came in today and told me that he didn't see why she couldn't come home tomorrow. Im not getting my hopes up again but I really want her to be able to come home. But she is doing well and we took a little walk down the hall tonight to get her out of the room, she made a new friend named Aundrea. Her room is down the hall, every time that her and Alyssa would pass each other this little girl would make all kinds of noises and jump around. haha. It was too cute. My mom flew in today, and it's so wonderful to see her. We missed her! Nothing else has really gone on today, just another typical day in the hospital. She's been a little cranky, I think she's upset too that she didn't get to come home today. That's it for now, here are a few pictures from last night and also today. =)

 

 

 

 

 

 

 

 

7-1-08

Well, we finally came home, once again! It's been a decent day for her, she's been extremely cranky, which is expected. She is still taking the Tylenol 3, which does pretty well. We are having problems getting her to drink her sippy cup, she wants you to give her everything through a staw. We got some new cups and hope they work out better. She seemed back to herself at dinner, eating granny's mashed potatoes!!! Its bedtime for her, and its going terrible. Lee and I have been taking turns and she does NOT want to sleep at all but she's so tired! Will update tomorrow and also add some photos. =)


7-3-08

First off, I am hoping tonight to have some pictures to add. Alyssa is doing well, we had a check up exam today and things look great! YAY! =)
Looks like this really didn't set us back at all, which is good news. She is feeling much better and we're usually just giving her the pain meds once a day, instead of 3. Unfortunetly Granny had to go home today, but she will be back soon. We had a great visit with her, and miss her already. We met a lady today that I had previously talked to on the MPS Forum, she was amazing and had quite a bit of knowledge on the MPS's. I just wish Alyssa would have felt a little better to be more socialable. Lee and Alyssa are taking a much needed nap right now, I think Im actually going to join! haha. Will update again later.
 

7-4-08

HAPPY 4TH everyone! Alyssa has done awesome today! Finally a day that we don't feel the need to give her medicine. =) We have some special friends coming into town tonight. My friend Sharon and her newphew Stephen will be here tonight. Today has been pretty uneventful, Alyssa got into Daddy's collection of Married with Children DVD's today, I got a cute picture. She kept running away because she knew she wasn't supposed to have them. haha. We're about to go to the grocery so I will update more tomorrow with pictures now that our princess is feeling better!

 

 

 

 

7-7-08

Today Alyssa had her MRI and then labs drawn. Everything went really good, she probably spent 10 minutes in recovery. She's had a really good weekend, it's been really rainy so we still haven't celebrated the 4th. haha. NaNa and PawPaw will be here tonight, so maybe we will get to do it then. We did light a few sparklers for her, and she seemed to enjoy it okay. Since her last 4 days in the hospital she hasn't been up to walking until last night. She walked all around the living room!!! She is just getting so big. We are considering tomorrow a big day, she has her spinal tap. =( We're really hoping that the pressure is low and that she won't need a shunt. Keep your fingers crossed!!!! If she does need one this will delay the process about a month, and we're already a month behind. If everything is good, her admittance date to the hospital is still set for July 14th. I have a couple pictures for now, and will have more later. Sharon and Stephen left this morning, wish them a safe trip home.

 

 

 

7-8-08

Just a quick update tonight, we're all wore out! Her spinal tap this morning went well, then we got the news from Alyssa's doctors that her fluid pressure was 29.5, mandatory shunt is 30, but they feel it is best to do it. So unfortunetly, she will have surgery again. The thought of the shunt itself doesn't scare me, the surgery is what gets me. From what I understand the doctor said she would more than likely have the shunt anywhere from 1-5 years. Seems like we're hitting every bump in the road. The one good thing is that it will only set us back 2 extra weeks... we hope! Tomorrow we don't have anything going on, so I will have more time to update and add photos. Please keep Alyssa in your prayers!


7-10-08


Today we went to our first apt with the Neuro surgeon. He says that shunt's in hurler patients are very common, and that they use the safest entry possible. He really made us feel a lot better about the procedure. It's scheduled for Monday morning. Alyssa has done really good today, except at her doctor visits she screams when nurses and doctors touch her. Who could blame her? Now she is watching Dora, as we are trying to relax for the rest of the day. Here a few pictures, some from Sharon's visit and some from when Nana and Pawpaw were here.

 

7-12-08

Alyssa has been so good this weekend! =) My dad has been down to visit, and it's been such a great visit. Alyssa really warmed up to him a lot. We went to the mall today and took Alyssa strolling, she rode on the train ride, and for some reason today was not thrilled. My dad will go home tomorrow morning and then tomorrow night Nana and Pawpaw will be here. On friday during Alyssa's doctor's pre-op appointment we met another family that has a son with Hurlers. His name is Logan and I believe he is 11 months old. He is the cutest thing! They have been at Duke for one week. We've talked to them once since then and will hopefully get together with them sometime next weekend or so. It's always good to talk to and hear from other familes who have been in our shoes. Please also keep Logan and his family in your prayers. Thank you to everyone for your continuous kind words of encouragement, it means so much and helps us get through the days that we are so far away from our family and friends. Here's a picture from tonight, will add more soon.

7-14-08

Today was the big day! I am so happy to say that surgery went great. We were all so worried. Her head looks much better than we thought it would, we were expecting worse... of course not really knowing what to expect. We want to thank everyone for their kind words and prayers that surgery would go wonderful! God listens! Here are two pictures from today.

 

7-15-08

WE ARE HOME!!! Alyssa did so well last night and today =) Last night she was even sitting up to play and eat! She is such a little trooper. She had a good nap once we got home, then ate some dinner and played peek a boo, and ran around in her walker. It's unbelieveable how well she is doing. They say that the shunt surgery really does't slow them down a lot. I never would have thought! Here are two photos, one from the hospital today and one from her dinner "peek a boo" session. :)

 

 

 

July 17,2008

Well,Alyssa has done soo good. She's walking around, very talk-a-tive and all smiles. We expected the shunt to really put her in the dumps and she was going to be in so much pain. She really doesn't act like it bothers her too much. We went to TGI Fridays to see Tiffany again last night and as always she was happy to see her. Alyssa has been eatting great, like big girl foods. As far as I know we don't have any appointments for a while so we finally get a break. Thanks for the kind words from everyone. I am working on getting donations to be tax deductable for everyone, so bare with me.




July 18, 2008

Not much to update today, just playing with Alyssa. We went to the doc for a quick checkup. Everything was good. Enjoy the pics...

 

 

July 20th 2008

Well we have been trying to relax as much as possible with Alyssa, since this week wasn't too busy. My sister Melinda came down and we had a ball. One of my friends from the hospital invited us to their horse farm so Alyssa could get out of the house and play with the horses. They had such a great time. Laura held Alyssa while they both rubbed the horses. It was great just to get out, and not only get out, to meet others and to have great friends. They are soo very nice and invited us back and to church with them. It's very great to be able to come down here and meet nice people like this. When my sister has time she will send the pics to me and ill put them up. Keep praying and thinking of us. There will be some website changes coming in a few weeks. I will go into more details on that later. Also it is a special someones birthday on the 21st. Love you babe. Happy B-day Laura


7-22-08

Today has been a great day for us to relax. My birthday was great, spending it with my little angel makes everyday worth while. =) Over the weekend Lee's sister Melinda was here, and we had an awesome visit with her. Alyssa took to her right away even though she hadn't seen her since we have been here, it was just precious! We should be getting the pictures of the horse farm soon, Alyssa really liked the horses. She's just like her momma! :) My Granny, Aunt MiMi and cousin Alisha made it down from Saturday to Monday, it was so good to see them. Alyssa liked to take turns walking to everyone. We miss them and hope they will be back when they can. The rest of this week will be pretty hetic. Tomorrow Alyssa will have her hearing aids put in, labs drawn for her line surgery (scheduled Wednesday), and a meeting to review all the evaluations they have done since we have been here. We're pretty nervous about her central lines, they say most children go home the same day depending on their vitals. Then we will take her back daily to have the dressing changed. Next week - as we are not sure of the days yet but Alyssa will have her dressing and stitches removed from her shunt and also be admitted for her 50 days. We should be finding out tomorrow and will keep everyone posted. Alyssa is doing well with her walking skills, managing to make it from Lee to me all the way across the living room!!! Thanks to everyone who continues to pray for Alyssa. =)

7-24-08

This morning Alyssa had surgery for her central lines. Everything went well and we are home now. We wrapped the lines up so it would be soft for her, and so she wouldnt mess with them. We will take her back to In Clinic everyday until Monday when she is admitted and they will flush her lines and change the dressing. We will update with photos later. Also, there is a new Hurlers Family! This makes 3 including us! We will meet them tomorrow and see what we can do to help them. Thank you everyone for praying for Alyssa and her surgeries. =)

7-25-08

Today has been a great day for Alyssa. =) We went early to the In clinic to have her dressing changed and her lines flushed... she was extra cranky, who could blame her! Poor thing has been through it since we've been here. I don't know how she does it, but she manages to keep a smile on her pretty face. We also met the other family today that is new to Duke, with a 10 month old son, who is adorable! Hopefully we will get together with them this weekend. Spoke to the other family tonight, Logan's parents, he is doing well. Said he is about one week behind Alyssa. It's so nice to meet other Hurler parents who are feeling the same way we are. We will hang out with them on Sunday. Alyssa's lines have been getting in the way, they gave us a mesh thing to wrap around her but it doesn't work so well. I just took a bandage and wrapped it all the way around her belly to keep them out of the way. She's been wearing her hearing aids today, and doing well with them. She usually cries when I put them in, as she did this morning; but after her nap I put them back in and she actually didn't even try to stop me, I think she know's that they help her hear. Here's a few pictures from tonight, Enjoy!

7-27-08

It's been a long day! It started off at 10:30 with a "dressing change" of Alyssa's lines which they did not have to change because it looked so good. They just needed to flush her lines. We had quite the play date today! Both Hurler families came over. Such adorable babies  =) (Alyssa 16 mo, Isiah 10 mo, & Logan 11 mo) We took some pictures, and I'll add them tonight. Please also keep their families in your prayers. Logan will start chemo about week after Alyssa and Isiah around the mid of August.

Alyssa has been walking ALL day! She is doing really well, still not brave enough to go all around, but being in the same room with her she will walk all around! She even holds one our hands when we walk, I have to say; I have anticipated that moment for a while now.

Tomorrow is the big day. As far as we know Alyssa will recieve chemo on Tuesday. She will only get an anti seizure medication tomorrow to help with the first few days of chemo, which have the side effect of seizures. As much as we hate to do this, we are ready to get it over with and get our little princess better. For the most part we are holding up well, I know it will really hit us while we're there. Will have more to update tomorrow. Please send prayers our way!

7-29-08

All I can really say is: WHAT A DAY!!!  Everything last night went good, except sleep. haha. The nurses were in so often I was patting Alyssa back to sleep at least every 2 hours. She recieved her first dose of chemotherapy at 5am this morning, and all went well. Alyssa received chemo again at 11am. At around 12pm her heart rate started getting really high and staying that way. Lee called the nurse's in and they immediately called a team together, and before we knew it, there we're about 25 people gathering in and out of Alyssa's room. The nurses explained to us that Alyssa was having SVT (supraventricular tachycardia). They gave Alyssa Amiodarone, which can be a scary drug. It brings the heart rate to zero for about 5 seconds and then will go back to normal. They say it "resets" the heart. Either way, its TERRIFYING!  They took an x-ray of Alyssa's chest to see the placement of her central lines. It seems that it's not uncommon for these lines to "tickle" the heart if it's placed too far in the vein causing the SVT. Within 2 hours Alyssa was in surgery having an inch taken off her lines. She recovered very well, and at 7pm recieved another dose of chemo and did wonderfully. Because earlier in the day they took so much blood for testing; her hemoglobin level was at 7.7, should be at 8. She recieved some blood to raise her level, and so far is doing great with it. We never expected our first day of chemo to be so hetic and scary.  Here are 2 pictures from earlier tonight, one of Alyssa having a little snack during chemo and one of her and daddy, while recieving blood. Thank you so much for all who are praying for our baby, and for all the support. We could never go at this alone. We love you all!

7-31-08

We we're not able to update the website from the hospital last night for some reason. Since our last episode things have been wonderful. She healed very quickly from the minor surgery of fixing her central line, and didn't even need any pain meds. She is such a little trooper. Her chemo has been going well, and she really doesn't seem sick yet. I know this is just the begining of chemo, but Im glad to say that it's going well. Alyssa's "team" is together, and I must say I think we have the best team possible! All of them are super. From our last stay we had a nurse that we all loved, Lauren. I found out last night that she is our primary! YAY! I should have some pictures to add later, thanks everyone for your prayers during this hard time. =)

8-1-08

Alyssa has been doing fabulous! She amazes us every single day. She gagged a little this morning eating breakfast, so I think the chemo is starting to make her belly upset. I've decorated Alyssa's door, it's so cute! Aunt Brittany and T T made Alyssa a poster for her room, I'll add a photo of them today. We didn't sleep so well last night, she finally went to sleep at 1am, and was up on and off until 8 this morning. Here's some photos:

8-3-08

This past week and weekend we've had Nana, Pawpaw, and Aunt Tay Tay here. It was so awesome to have them here, as usual! Alyssa has been doing well, she wasn't feeling very well last night so they gave her some pain medication and she actually slept all night. Today has been somewhat of a hard day. You can now tell that Alyssa just doesn't feel good; as expected. They tell us this happens during half of the chemo...and thats where we are. She needed some pain meds today, and is now doing much better. Alyssa and Daddy are hanging out in the chair watching Dora. I have quite a few pictures to upload from home later of this past weekend. =) She's keeping in good spirits.

Here are the pictures I promised!! One is of Alyssa and I after the Puppet Show that a few of the patients put on. And the rest from Aunt Tay Tay's visit. Enjoy!

 

 

 

August 05, 2008

Im sorry for the lack of updates. Things have started to get pretty busy around here. The day Alyssa started her ATG was pretty rough. She ate well that morning and seemed okay, but within an hour of getting it got pretty sick. She ended up vomiting her meds, and then a few hours later vomited a number of times after getting a bottle of apple juice. Our doctor has advised us as of that day, not to feed her any longer or give her anything to drink. On the day of the transplant she will recieve nutrients through her line. Not to mention she is still getting IV fluids. Since the night before last Alyssa has been on a Pain drip, that delivers her a small dose of pain meds around the clock. This really seems to help her get comfortable. Usually at night they have to up it a bit, otherwise she's really fussy and restless. The nurse says the effects of the ATG are worse at night. She continues to spike fevers now and then, and after a dose of tylenol it goes back down, luckily! She's been sleeping a little more than usual, due to the medications and simply not feeling well. She still manages to brighten our day with that beautiful smile of hers. Tomorrow is her last day of chemo, and then thursday will be the big day; transplant day! My mom; Granny, will be here tomorrow! We're pretty excited to see her. Today we met Alyssa's "Best Buddy," Whitney. I have to say, I think Whitney will be a great match for Alyssa. She is also a RN on the 3rd floor at the hospital, which is a HUGE plus!  Best Buddy is a program they offer here for families. They can run errands, hang out with the child so parents can run errands or grab a meal, they will usually help you out with whatever you need. We don't need any errands ran, but it would be nice to grab dinner once in a while and especially for Alyssa to have a special friend to interact with.

Also, everyone please also pray for Logan. He was admitted today and will begin his chemo tomorrow. This is his website address: www.LoganJackStout.com I took liberty of decorating his door with pictures the same way I did for Alyssa, and they are adorable!!! We wish them the best!! =)  Thank you for all the prayers and support, things aren't easy up here emotionally, but we're dealing. Alyssa is taking things so well, she is so amazing!

8-6-08

Alyssa had a pretty good day, she even played for quite a while and actually wanted to stand up and play. She has been such a trooper through all this, we couldn't be more proud of her. She is so amazing. Even when you know she's feeling so bad, she still manages to show us that beautiful smile now and then. The ATG has given her the "hives" which are basically just red itchy splotches. They are EVERYWHERE! The benadryl really helps, we feel so bad for her. Tomorrow is the big day! =) After tomorrow she will be able to be totally unplugged from everything for an hour a day at most, she will be free to roam the halls!

 

8-9-2008

Well our internet has been down at the apartment so bare with us alil. Alyssa has been doing excellent. She got her transplant in this very small bag that looked like koolaid. She was fussy all day after that which they said was normal. But yesterday she was sooo good. She just wanted to cuddle and it was so nice to get that time with her. She finally got to be unhooked yesterday so i took her out for a walk in the halls. She wasnt too happy at first but after she got the hang of it she was just fine. All of her red sploches are gone so thats a good sign. Well im going to go cuddle with her again. She is so cute. When the internet gets back up we will update with pics.

 

8-10-2008

Alyssa has done pretty well today, sleeping for most of it. She seems to be in a little better mood than yesterday. She still just likes to have us close for comfort.


8-11-08

Alyssa has been a complete ANGEL today!!! She's hardly napped and is on cloud 9! Laughing, playing, and even walked down the hall with me twice! The last few days have been pretty uneventful, every since her transplant (which went awesome) she's been sleeping most the day and night. She is also on a constant pain drip of Fetinol. A very low dose, but just enough to keep her comfortable. Her site for the central line has been looking a little irriated so the nurses have been conducting daily dressing changes and also putting on an antibiotic cream, they are expecting this to clear up in a few days. Granny has been in town the last few days and stayed all night with Alyssa last night to give Lee and I a break. Alyssa has been such the cuddle bug lately. All she wants you to do is lay down with her, and she will just cuddle, rub your arm, and blabble to you. She is just so amazing, and is taking things so very well. Aunt TT made Alyssa an adorable Dora blankie, she likes it! We are sending my computer off at home and should have it back within 2 weeks, so by then we're hoping to add pictures from the transplant and some others. Logan has been having a little bit of a rough time; he really isn't feeling well and isn't eating much. Please don't forget to keep him in your prayers as well, and visit his website! www.loganjackstout.com

 8-12-08

Lee figured out a way to get the internet to work with a USB cable, YAY! Im going to upload a few pictures for now, but tomorrow we will be sending the lap top off to get the wireless button fixed...luckily HP does that for free!  Today has been a pretty good day for Alyssa, she's in such a good mood; as always! She slept so much the last few days that now she doesn't want to sleep at all! Everything is going good except the diareahia, we are usually changing her bed sheets out 3-4 times a day, and she still isn't eating. Poor thing. No sign of Mucositis yet, knock on wood! She doesn't do well with mouth care, but it has to be done. I have one photo from her transplant, and then the others are from this weekend. We hope you enjoy!

8-15-08

Alyssa has been doing really well. She had to have "the" haircut the night before last. When she would get up from her nap her bed and pillow case would be covered in hair, not to mention getting in her mouth. We decided not to wait for the worst and just shave it off. She looks absolutely adorable...imagine that huh!? haha. We just try to look at it as a good thing; the treatment is doing exactly what it's supposed to do! We are at day +8 and today her count was 0.1. It fluctuates for the first week or two... a few days ago it was 0.1, then back to 0.0, hopefully tomorrow we will see some sign's of engraftment. The only sign we have seen so far is a runny nose. They say when you start to engraft you will see flu like symptoms such as fever and runny nose. Logan had his transplant today and is doing really well, just being a lazy bones! Please feel free to drop him and his family a few words of encouragement. (www.LoganJackStout.com) We already sent our home laptop off to be fixed, so for now we have cell phone picutres; bare with us!

8-16-08

Today is day +9 and Alyssa is doing well, being the little princess that she is! =) She had a good day, everyday they change out her pole lines so we have some "free time," we walked with her through the hallways and she likes that so much. All the nurses make over her and you can tell she adores every second of it. She isn't able to be unplugged for longer than 15 minutes at a time due to the fact that her blood pressure goes up without the IV medication. They have been trying to wean her off but it hasn't been sucussful yet. Tonight has been a bit trying; she just isn't feeling well. They upped her pain medication some and it seems to solve the problem for now. Good news for tonight is that Alyssa has a low grade fever!!!! Whoever thought that would be considered good news!? The doctor thinks she is engrafting, they took some cultures to be sure and make sure it isn't an infection, which they say is just protocal. As I drove home earlier to spend a few hours there, I passed a park; as I do everyday. But today when I looked over at it, it will filled with dozens of kids, running around, climbling, laughing; and I felt sad. I wish so bad that Alyssa didn't have to go through all this treatment, I wish she could go outside and have fun, play...to be a child! When I first found out the disease Alyssa has, I kept thinking "What did I ever do to deserve this." I have to say, now I see it in a totally different light. I was told that it takes a special person to have a special child. I believe that. Lee and I try our best every single day to be the best parents possible, and I have to say, I think we are pretty darn close! We love her more than anything in the entire world and would do anything we could for her, and we do just that. I know I feel special, privledged and blessed to have her as my daughter. Luckily, Lee and I have also been blessed with an amazing family and support system who are always there for us. We have also been blessed with everyone who reads our updates and prays for Alyssa, it's just amazing! Every night when I say my prayers, I always thank God for Alyssa and all the joy she bring to everyone's life. I hope that tomorrow we have a good white cell count number to update with!  

8-18-08

It's Day +11 and Alyssa hasn't been feeling so well since the last update. Yesterday morning she was woken up by her coughing which led to vomiting up plegm and bial a few times. She slept a lot yesterday, you could tell she wasn't feeling well. She has also had a fever since, which stayed low grade until last night when it reached 104, and they say that this is completely normal and it's a sign of engraftment. They also give her tylenol to help with the fever too. Lee stayed with her last night and says that she didn't sleep well at all. Early this morning they decided to give her a little oxygen because she was dropping in the 80's. They also say that this is normal. Her WBC (white blood count) is still 0.1. Has been for the last 3 days. She is also starting to get the engraftment "rash." They have upped her pain medication once again, she just isn't getting herself comfortable. And they never know how bad the mucositis is because it isn't only in the mouth...her gums are swollen to the point that you cannot see her teeth anymore, although there are no sores there. The sore's range anywhere from the mouth, stomach, and rectum. She has been having diareahia for the last week, since she hasn't been eating for some time now it's pretty much just bial. This is the hardest thing we've ever had to watch, but we know that we are doing the best thing for her possible. If there are any changes today; we will update tonight.

4:45 pm

Alyssa has slept most of the day and is actually sitting up in bed playing and watching Dora. I didn't notice so much this morning because she was asleep, but her lips are VERY swollen. I immediatley called in the nurse to see what was wrong - and she said it's probably just the Mucositis and that the doctors hadn't made their rounds yet but they will see her. They came in to check her out and concluded that it is in fact the Mucositis. She still doesn't have any sore's in her mouth, but during mouth care and a few other times today I have removed what seem to be balls of gooey mucus. I sure hope her mouth is better soon, it's painful just to look at. The nurse also changed her dressing and it DID appear to look a little better, thank goodness!

WE WERE CONTACTED BY A VERY NICE LADY NAMED STACY WHO ASKED US TO BE ON HER RADIO SHOW. TOMORROW MORNING AT 8:35AM FOR THOSE OF YOU IN FRANKFORT AND SURROUNDING COUNTIES WE WILL SPEAK ON 1490AM ABOUT HURLERS DISEASE AND ALYSSA'S TREATMENT!  THERE'S NO WAY TO LISTEN ONLINE SO WE ARE TRYING TO HAVE IT RECORDED SO WE CAN PLAY IT ON THE WEBSITE AS WELL AS KEEP IT FOR ALYSSA.

Please continue to pray for our sweet baby =)

8-19-08

 

Day +12; we are still at 0.1...and probably will be for the next 5 days. Because her rash, fever and swelling are so bad Alyssa's doctors have decided to give her a steriod to take care of this and expect her to feel better tomorrow afternoon. They say this usually delay's engraftment about 5 days or so, luckily it doesn't harm it. She has been pretty pitiful still, all day. Lee said she didn't sleep well last night and kept waking up screaming. They decided this morning they needed to up her pain medication to keep her comfortable. She has been sleeping all day, since I've gotten here at 9:30am, only waking up to "yell" at me for changing a few diapers and mouth care. The rash is so bad, it is seriously everywhere. She is covered in red bumps! Except her face...and her lips make up for that! Poor thing! They are skipping the dressing change today since she feels so terrible; and yesterday it looked much better. Hopefully this will be a good opportunity for her to catch up on her sleep. The radio show went really well this morning, I didn't get nervous until I was on hold waiting!! Stacey was wonderful and asked me some really good questions on the disease as well as Alyssa. We miss everyone and hope all is well. Will update soon. I can't wait to have my computer back so that we can update real pictures!!!


8-20-08

Day +13. Yesterday after the doctor came in to see Alyssa he suggeted that she should be put on steriods, just two doses to help ease the symptoms of the engraftment. The swelling of her lips were terrible, her fever so high, and the engraftment bumpy red rash. I guess you could say she had a decent night, she went to bed at 12pm, and was just kind of up and down. I guess I patted her back to sleep about 5 times. This morning you can tell she is feeling much better. She still doesn't want to play but she is actually staying awake for longer than 10 minutes. Her lips aren't nearly as swollen, her fever is off and on, and the rash is still full force. The doctor did explain to us though that when the steriod is given it basically slows down the engraftment process by about usually 4 days. That way her symptoms won't be so bad. They have upped her pain medication again to help keep her comfortable. She's been waking up coughing, and coughing so bad that she almost vomits, so they've given her some adavan last night and this morning to help with that. It's still early, so we'll update later if there has been any changes. Here's a picture Lee took with his phone about 10 minutes ago. =)

8-21-08

Day +14. Not a whole lot to update on; things are mostly still the same. Alyssa is still sleeping 95% of the day, and night. They have upped her pain medicine a few more times due to her pain. She has a really hard time getting comfortable, and a push of her PCA pump usually does the trick for quite a while. The steriods have helped as far as the swelling and the fevers. Her lips are still pretty swollen, as you will see in the pictures below. The rash isn't as bad, but it's still there. Her cells are still 0.1 but we are hoping in the next 2-3 days to see a difference. The doctors are pretty sure she is still engrafting. Also please keep Logan and Isiah in your prayers. Isiah was admitted on Tuesday and began his chemo Wednesday at 5am. Also, if you would like to listen to the radio interview that took place you can do so here: http://blog.jonathanmertz.com/wordpress/?p=45

 

 

***Quick Update***

Lee's long time friend Nathan decided he would shave his head to support Alyssa losing hers. No pressure; but if anyone want's to do the same, we will post all photos to the website for everyone to see! Big thanks to Nathan!

 

8-22-08

Day +15. Im so excited to say that Alyssa's WBC is finally at .2!!!! This means she is engrafting!!! =) She still isn't feeling so well, and sleeping most of the time but as her cells grow she will start to feel better. This is such a blessing in itself; and we could never thank an annoymous mother and her baby enough. Now we just have to pray they keep growing and that she engrafts 100%!

8-23-08

Day +16. ALYSSA IS .3 TODAY!!! They've upped her pain med twice since yesterday, and for right now it seems to help. They have also upped her blood pressure med, which has caused her to have a high heart rate, which they say is normal. They are watching her closely. Of course she still isn't feeling well, but Lee did manage to get her in the hallway to carry her around for about 15 minutes while she was unhooked from her pole. He said she was pointing and kept saying "da da." That was her fun for the day, after that she didn't want to do much. She is taking tylenol by mouth really well, and actually likes to. They are giving her that for the bone pain they say children get when they are engrafting, since it apprarently works better than the regular pain drip she is on. She also now LOVES mouth care; which she hated with a passion. Im sure now any taste is better than none. Her lips aren't as swollen, but now they are peeling and cracking from being swollen so we've been putting a special kind of lip balm on her, she's been smacking her lips together afterwards. hehe. She has the cutest personality; although we don't see it often enough this days. I hope tomorrow I have an even better update for everyone! Papaw has left this morning after getting here Wednesday. We had a good visit and Lee and I actually had some time to hang out together, it was nice. NaNa has been sick and we hope she feels better so that next time she can come too! I talked to Logan's Mommy tonight and she said that Logan is still doing and feeling great, which is wonderful, we hope he keeps it up and also engrafts soon! Oh, Lee also got a hair cut for Alyssa!!! =) He's such a good daddy!

8-25-08

Day +18! Well yesterday Alyssa was still at .3, it's 1:07 am, just got her to bed a little bit ago and the nurse just came in to tell me that Alyssa needs a blood transfusion due to low hemoglobin and also platlets...BUT THAT SHE'S .4!!!!  She seems to be feeling quite a bit better today, seems much happier since they've upped her pain med a bit last night. Her heart rate last night stayed up pretty high, due to either the pain or to the blood pressure med. (which they have finally been able to cut back on) Today my Dad and Aunt Carole will be here to visit and I can't wait to see them!!! Please keep Alyssa, Logan and Isiah in your prayers! =)

 

August 26, 2008

Well its 4:32am and im staying at the hospital and cant sleep. Seems like both Laura and I have that problem here and at home. Alyssa was just terrific today. She sat up playing, watching tv longer than she has in a while. Her lips look so much better. They were chapped a lil this morning but tonight i see that that is no more, so her lips look great. She was at .4 again today which is great. So all in all Alyssa is getting alot better. On another note, my friend Nathan Peniston that works at the Georgetown Graphic wrote an article on Alyssa. It was very kind and we couldnt be happier. Here is the link ...Please read..

http://www.georgetownnews.com/articles/2008/08/24/opinion/doc48b08ad6f3a0a667252460.txt

And alil update to keep everyone in a good mood, got Alyssa's wbc again tonite, how does  ".6" sound? I told Laura and we are soo happy and so are the nurses. Matched with her SEGS that gives her an ANC of 192. This morning it was 96. Pretty good over a night. When she has 500 ANC or more for 3 days in a row, thats when she can be discharged because she will then be fully engrafted. Keep your fingers crossed and keep praying. Its all working for us. As a father going thru this rough time, im so proud of Alyssa and Laura for fighting all this together, all three of us, as a family.Keep posted everyone. Also finds out Alyssa loves her glowing sea horse. Whenever its time for nite nite, she snuggles up to it and gets as close as possible to it. Now tonight i put the sea horse behind her so it didnt hurt her eyes, well 10 minutes later she had picked it up and put it right next to her face, and fell asleep like that. Later on in the night i had to change her diaper and she did the same thing. Here is a sweet lil pic for everyone. Kinda dark but you can see her face on the left and sea horse on the right.

 

 

Just to know, this is what it means to be fully engrafted. Alyssa will be fully engrafted when her ANC is greater than 500 for 3 consectutive days.This is where we know her body can start fighting infections again, however it is still weak so she will still have to wear her mask for safety. Here is how you get the ANC count. You need 3 values. Segs, Bands, and WBC

Last night she had Segs=25   Bands=7   WBC=.6

You take Segs + Bands x WBC x 1000 = ???? / 100 = ANC

So 25+7x.6x1000=19200/100=192 ANC

Yesterday morning she was at 96 ANC, so a great improvement

 8-28-08

Day +21. Alyssa has been doing wonderful! As it's 12:30am we should get her blood results soon and will have to update that in the morning. As for right now, Alyssa is still at .6. Her ANC went down a tad but the doctors are more than happy with the results. She's been playing quite a bit now, and even ate a small amount of applesauce, and would have eaten more if we would have let her. We are just making sure she wont get sick and that the mucositis is clearing up a bit. Im going to add a few pictures tonight, you can really see how much better she is doing. Also, Logan has been having a fairly difficult time the last 2 days. He is on an oxygen mask and also has some fluid around his lungs from retaining so much fluid. We just feel awful for little Logan, we know what it's like for other scary things to go on besides the transplant and we hope he gets better really soon. Isiah is also not feeling so well, tomorrow he will get his transplant!! YAY!

 

 

8-29-08

Day +22. Yesterday Alyssa's count went back to .4, and then today up to .5. They say this is normal, but its also very nerve racking for us. They say this is happening because of the steroid they are giving her to subside her symptoms of engraftment such as the fever, rash, mucositis and swelling. We don't know exactly how long she will be on the steroid but we're sure hoping that she engrafts soon. Lee and I wait up every night to get her numbers, and call one another first thing when we find out. It's kind of like playing the lottery to us. haha. She continues to improve every day, which is a wonderful thing. She's actually still eating!!! Yesterday we started her off with some banannas and she's doing well. Of course we are doing about an ounce of it at a time to make sure she doesn't get sick or upset her stomach since it's been nearly 24 days since she has eaten last. We are going to attempt to give her a sippy cup today and see if she will drink any juice, as it has also been 24 days since she's had anything to drink.

Im happy to say that Logan is doing better and is on a nasal canula now instead of the oxygen mask. He and Alyssa are such troopers!! Also, today is Isiah's transplant day!!  Please continue to keep them all in your prayers!

8-30-08

Day +23. Unfortunetly the last two days Alyssa has really seemed to not feel well again. Yesterday her WBC was .5 and today it was only .4. They still say this is because of the steriods. We sure hope it goes up soon. Our hospital stay has been so trying, but so we're so thankful every single day. I sure hope that tonight her counts will go up a little higher. She didn't eat anything today, but I did try her sippy cup... and Im so proud to say we have a sippy cup user!! HORRAY!! The bottle is no more! =) She drank from it like a pro, you would think she just ran two miles. haha. I will update later on her count and also take photo of the big girl using her big girl cup! Pray for those cells! Also... Little Logan hasn't been doing so well, he is having some kidney issues and is still on oxygen, please continue to keep him in your prayers. We saw Isiah in the hallway today, and he looks really good!

8-31-08

Day +24. We are still at .4 today, but overall, Alyssa had a great day! YAY! She was up and down playing all day, and through out the day managed to eat about 10 bites of applesauce along with 15 ounces of fluid. She is a pro at the sippy cup, and she doesn't want anyones help. Lee and I gave her a bath tonight, we put her central lines in a baggy and wrapped plastic wrap around her chest and washed her off. She screamed the whole time, although didn't let out one tear. She was fine the moment we got her out. haha. My long time friend Sharon sent up some decorations for Alyssa as well as card that plays the hamster dance song when you open it, ALYSSA LOVES IT! I took a video of her today that I will get Lee help me to load tomorrow, she is just opening and closing it after the music starts. She is so funny! Later on we will find out her numbers and if it isn't too late I will post them tonight.

9-01-08

Day +25. Alyssa is doing well today, last night her count was down to .3. We talked to her doctors today and they agreed to start weaning her off the steriod; but first they have to run some test because they seem to think she may have an infection in her bone marrow. They said that even though she is getting the steriod, her ANC should still be higher because the steriod only kills off some of them lymphocites, and that the other 3 types of white blood cells should be growing. He says we should get the results either late tonight or tomorrow because of the holiday. We are hoping so bad that everything is okay and that the cells will just take off! Every night that we await for her cell results are so draining, we are constantly telling each other that there going to go up, and then we get the results and its just getting lower. I don't want to say we're getting our hopes up, we're just having a very hard time understanding why her WBC isn't going up. We know we're doing the very best thing for her and of course just want it to turn out the very best. We will update as soon as we get more news.

Lee spoke to Logan's Dad today and it seems he is a little better, and is also up to .7 on his WBC! YAY LOGAN!

Please keep these children in your prayers.

 9-3-08

Day +27. Yesterday Alyssa's WBC was .3 and her ANC was 142. Today it is .3 and ANC is 162. Her test for infection fortunetly came back negative. YAY! Last night was so hard, for all of us. Starting early in the night, you could tell Alyssa was feeling really bad. I then find out that the doctors lowered her pain meds without even telling us. The nurse even thought it strange that they would even do that since she is still on the steriod to help her with other symptoms - which she will soon be weaned off of. It took me calling the nurse in 5 times and 2 phone calls to the doctor to finally have something done other than Adavan and Benadryl; which worked for about 2 hours. They put her on a new kind of pain medication which does the same thing as the Fetinol, just a stronger medicine that she can have more of. The first phone call to the doctor was at 12:30 pm, and the next at 3:30 am... and Alyssa screamed almost the whole time in between. It broke my heart. She usually loves for me to lay in her bed with her, last night she didn't want me near it, nor her. Every time I would touch her she would scream louder and push me away. So at 3:30am I called the nurse in and told her this couldn't go on all night. She wasn't Alyssa's usual nurse's but she's had her a few times and knew that this wasn't the norm for her. After 4:30am we got some rest, until she decided to get up at 8:30am. I got in her bed with her and we fell asleep at 10am till 11:30 (watching Dora, of course!) Most of the nurses find it amusing that I fit in Alyssa's bed, and some say that Im the only mom they've ever seen do that. 90% of the time it helps, and Im willing to do anything to make her comfy. I think lately it's been wearing on us so bad because we've been there since July 28th. I guess too we also expected things to move a little quicker. I know you can't go in this expecting anything since children go at their own rate. Overall she has been pretty good today, just really tired. She also has not been eating or drinking, since sunday. We'll keep trying until she's ready again. Here's 2 photos, one is from a few days ago in the hallway and the other is of her sleeping last night.

9-4-08

Day +28. Well today Alyssa was still .3, and her ANC has gone down to 96. We're hoping that pretty soon it will all shoot up! Today you could tell she wasn't feeling too well but tonight she did seem to improve and even smiled for Daddy and while watching Dora. She slept most of the day, but overal again was decent. Today is Logan's birthday - he turned 1 today!!! He is off the oxygen and getting better day by day. I did happen to see Isiah in the hall today, momentarily while I was grabbing an extra bag. Mommy and Nana we're walking him in a little red car. I think he looks even more adorable without hair!! Please continue to keep the children in your prayers.

9-5-08

Day +29. Just a very quick update at 2:30am to let everyone know that Alyssa is .4 today, and ANC 208!!!!! HORRAY!!! More to come later.

11:30am - At around 6:30am this morning Alyssa's oxygen level started dropping, by 7am she was put on the nasal canula and given lasiks incase she has retained fluid. At around 8am they came in to take a chest xray. We've had to keep her in a sitting position to keep her oxygen level up, she is just so sleepy though! She was falling asleep sitting up, I tried making a comfy spot for her with 3 pillows to keep her upright and surrounding her in blankets to keep her on her side. That worked for a little while and she had to be sat up again. They have put an oxygen mask on her that I hope will help so she can also lay down and get some rest. I don't think we've ever seen her so tired. Last night was peaceful and she did wonderful until than. Her doctor came in around 10am to talk to me about what was going on. He thinks that because her WBC went up and so did her ANC, drastically, it's the highest it's ever been he thinks she is just experiencing some of the symptoms. She has retained some fluid in her lungs, and they are watching her very closely. Her nurse last night and today are wonderful, (from her team), we couldn't have asked for better nurses. They are right on top of everything.  I will update as soon as I find out more. Please pray for our baby girl to feel much better soon.

1:17am - What a night! Tonight has by far been the hardest night we've had here at Duke. Alyssa's oxygen level kept dropping throughout the day, and they kept checking her blood gas levels to make sure they are normal and that Alyssa isn't working too hard to breathe. Earlier in the day they had PICU (Pediatric Intensive Care Unit) come to asess Alyssa. On the last test they did at around 9:45 it all showed normal except for her carbon monoxcide level, it was quite a bit higher than it was earlier in the night. They say this is because she is working harder to breathe and with the oxygen level's going low she isn't able to expell all of it. The doctor made the decision to send Alyssa to PICU since they had an open bed, and would rather handle it now than at 3am whenever everyone would be rushing. Lee and I agreed, and on to PICU we went. Once we got there they tried to use a Nebulizer with Albuterol to see if it helped her breathing; she didn't breathe as loudly, but her oxygen level was still dropping. They decided to try C-PAP, it's a tube with a piece that goes onto the nose and straps on, this did not work because breathes through her mouth and not her nose. They decided it would be best to intubate Alyssa and put her on a Ventilator. We had to leave the room for this, and it took about 35 minutes before we could go see her. Nothing could have ever prepared us for this moment, or any of the ones before. Once we saw her on the ventilator, our hearts broke. It's by far the hardest moment we've ever had, even though we know this is the best thing for her. They also gave her a big dose of steriods to help with the fluid in her lungs. They think this happened because she again was engrafting too fast. We are now home, since we are not able to stay all night with Alyssa in PICU, and she has a nurse with her at all times. They also sedated her during the intubation and will continue to be sedated as long as she is on the ventilator. The hardest part of it all was leaving her tonight. She was starting to "wake" up a little bit and seemed to be gagging on the tube, they gave her more sedation medication and then got somewhat of a nose bleed from the nostril without the tube in it. It's just plain scary. My heart hurts for her. Please continue to pray for Alyssa. We will update once we have more info.

9-6-08

Day +30, WBC .1. Alyssa did very well last night and is continuing to do well today. When she first started on the ventilator it was doing 90% of her breathing, and now she is at 50%, which is very good. They have been repeating her xrays and it looks a slight bit better today. They are expecting the ventilator to get rid of the fluid. They are still trying to figure out why this happened. They have put a cathader in Alyssa so they can keep an exact measure of her urine, and have to place arm restraints on her because even though she is sedated she would grab at the tube. She looks better today, her color is good and she appears to be a little rested. Her WBC count will be down for a while since they gave her such a big dose of steriods...which right not isn't a big deal, only thing we're really worried about at the moment is the vent. Thank you for everyone's kind words of support and prayer. We will continue to update as we find out more. Here's a photo we took of her today.