Three Appointments Down, but still stuck in Houston

Bare with me, it's been a crazy day!

We arrived in Houston on Sunday in time to celebrate Samuel's fourth birthday. Alex considers Samuel his brother so it was important for us to be here for it. Alex loved painting pottery and made an awesome frog box. Then it was early to bed to gear up for our appointments.

Yesterday we saw our surgeon, Dr. Tsao. I trust him completely and he has proven to always have Alex's best interests in mind. He makes all his decisions to help Alex have the most hope for the future. This week he proved this once again. The easy answer would have been to just replace Alex's port. However, a person only has a limited number of spots to put a central line. Once you use a spot it is gone. Knowing that Alex will most likely need a port his entire life, Dr. Tsao is doing everything in his power to preserve Alex's current port as long as possible. So Alex will be admitted on Thursday and they will once again use a "clot busting medication" to get Alex's port functioning again.
Dr. Tsao also looked at some tissue that had grown around Alex's Jtube and is pushing the tube up. He decided to use silver nitrate to "burn" the tissue. This is very unpleasant and Alex was a real trooper. On Thursday, he will look at the site again and determine if he needs to take Buggy into the OR to remove the tissue surgically. At this point, it looks likely that that will be necessary as the silver nitrate does not appear to be taking care of the problem.

Today we had appointments with both Dr. Koenig and Dr. Navarro (GI). As always Alex couldn't wait to get to Dr. K's and waited by the elevator for her to get there this morning. Then he ran into her waiting arms. What a blessing to have a doctor that loves Buggy and that he loves so much. The appointment was much more "serious" then I anticipated. Alex has a syrinx in his spine. A syrinx is a cavity of fluid in the spinal cord. We have been routinely watching this through frequent MRI's and other tests. Up until now he has been asymptomatic. Recently he has developed some symptoms that "may" be caused by the syrinx. We are going to run some simple bloodwork (once his port is working) to rule out some easy fixes for these symptoms. If the labs are ok, then we will quickly schedule an MRI and SSEP. We are praying this is not the syrinx. If the syrinx is the cause then we will have no choice but to put Buggy through a pretty serious surgery and place a shunt in his spine. This has some pretty scary possible side effects so we are hoping we can avoid this. We also discussed Alex's improvement since his Keppra (seizure med) increase. The last thing we talked about was his overall trouble with absorption. Other then that Dr. Koenig is pretty happy with things overall.
After leaving Dr. Koenig we headed to Dr. Navarro's. Alex is at his GI baseline. It is not the world's best GI situation, but it is Alex's normal and we are happy to be there as we have seen much worse. I was expecting to have Dr. Navarro come in say keep things status quo and see you in a couple months. Unfortunately, that was not the case. He came in and told me he was concerned with Alex's weight. Over the last year and a half, Alex has had no net weight gain. They have decided that it is the time to address this. He hasn't even gained as well as expected on TPN. His best growth has been when he is on both TPN and feeds together. We are trying to avoid TPN so the decision was made to put MCT (medium chain triglycerides) oil in Buggy's tube a few times a day. This is the only fat source that does cause the pancreas to release enzymes. Of course with Alex's history of pancreatitis we would not want to do anything to aggrevate his pancreas. I left there thinking we had a great plan assuming Buggy could tolerate it. BUT...after talking to Dr. K this afternoon she told me that MCT can sometimes cause metabolic issues in these kids. Alex has shown us in the past that he can become metabolically unstable pretty easily so we will have to keep a close eye on him. We are going to start this inpatient this week so we can monitor his labs and make sure he is doing okay.
We were supposed to have 2 appointments tomorrow (Hematology and cardiology), but both have been moved to next Wed.
I think that about sums up our crazy start to the week. It looks like we will be here through next Thursday unless something changes.
I will continue to update as the week progresses.
Ali

On the Road AGAIN!

Alex and I are packing up and getting ready to head out to Houston. This is my very least favorite kind of trip because I have no idea how long we will be there! Let me explain.... Ignore the smoke coming out of my ears, BUT Alex's cardiology appt was cancelled for what amounts to the 5th time this year. Alex has never seen a carsiologist and the heart is an organ that is often effected in mito. So we need to see the cardiologist. I left a very unhappy message the day I got the call. I got a call back and they can see Alex but not until Sept 8th. What?!!! So variable number one is whether I will extend my trip an entire week to see cardiology. Also adding to the fun is two surgery issues. Alex's port is once again not drawing back blood for the umpteenth time and he is having pretty significant pain around his jtube where there is quite a bit of scar tissue. So depending on how they decide to fix his port and if they need to do anything to his Jtube will determine when we come home. Not easy to pack when you have no length of stay, don't know if you will be inpatient for any of it, etc. Thank goodness the Knights are so good to us and not only let us stay for any undetermined amount of time, but also let me leave whatever supplies I want in an attempt to make life easier. Missy and Ben- I will forever be grateful for being so selfless and for loving Alex and I like family. You make every trip to Houston so much more like a vacation. Because of you, Alex and I look forward to our trips instead of dreading them. Mis- I'll even try to not yell at you if you keep me up all night!!!

In other exciting news....We started school this week. Alex seems to be really enjoying it so far. It is called Hideaways in History. His favorite parts are "Indiana Stickenstones, Sticky and Chirp" (three bugs that take us back into history and tell stories), making his "hideaway" for the week, and his readers which are pretty advanced and will have him reading chapter books by the middle of the year. I am impressed with how quickly he has jumped back into our routine. So far he doesn't seem to have lost any skills over the summer. Reading is by far his best subject. This makes me happy because I have always been a reader. I hope he continues to find joy in books.

I will have my laptop with me so I will be updating. Please pray for a good trip and as always for Bruce to find a good job.

Ali

What a Whirlwind!

Whew! What a crazy 6 weeks we have had. I can barely catch my breath!!! On Saturday, Bruce's mom flew in. On Sunday, Bruce's sister joined us. It has been way too long since we have seen them. Grandma hasn't seen Alex in a few years and Cassie hasn't seen him since he was a baby. Sunday we just enjoyed some quiet time. Monday we went to the zoo in the unbearable heat and showed Aunt Cassie around texas.I loved watching them enjoy getting to know him again. He fell in love instantly. He was glued to Cassie's hip. He can't wait until they can come visit again. Tuesday they got twatch him do therapy and then off to a tearful goodbye at the airport. We hope next time we can have a longer visit!

Julie and Cass- Thanks for coming to visit. We loved having you guys. We hate that we don't get to see you more often. My biggest wish is that we could see ALL our family more often.

For our medical update....Labs when we got home were pretty good. Buggy is having trouble keeping his Vitamin B12 at an acceptable level. We also realized that his keppra (seizure med) level in his blood is too low which explains the increase in seizure activity we have seen. The problem is that he is getting "enough" of both of these meds. He just doesn't absorb anything like he should. This also explains why he can never gain weight. Dr. Koenig and Dr. Navarro (GI) are brainstorming and trying to come up with the best solution.

This morning we saw a local metabolic geneticist that we see once a year in the rare case that we have to be hospitalized locally. We need to have someone who can advocate for Alex's metabolic needs. She thinks that Alex clinically "screams" a certain form of mito (mainly pancreatic, liver and hematology issues). However, we had done the bloodwork for this syndrome a few years back and it was negative. She says there is research that shows that sometimes it shows in other tissues and not the blood. She will be consulting with Dr. K to see about testing Alex's liver (we have a sample left from his biopsy) for this syndrome. Other then that I just filled her in on the last year's worth of history and we were on our way.

We have a few days to slow down and then we head back to Houston the last week of August for some appts.

Here are a few pics of Alex and cayman that I never got to include.

Ali

Home Again

It is always so very hard to say goodbye. Anyone who knows me knows I hate saying goodbye. It always reduces me to a crying mess. I wish I could have all my friends and family close by. Well unfortunately my Buggy got my emotional DNA. It is safe to say that the two of us make quite a scene at the airport. I am pretty sure the people in Wilmington thought someone had died when they saw Alex and I after saying goodbye to Mimi on Wednesday!

Let me see where to start....Last Saturday Shortly after naptime Cayman and Weatherly came to visit. The kids quickly fell into their routine of playing. Weatherly and I had a little time to catch up and then we headed off for dinner and ice cream at the creamery. It was pretty late by the time we got home and the kids fell asleep. Weath and I were like two schoolgirls chatting well into the night. I love my time with Weatherly. We always step back into our friendship as if we have seen each other the day before. It is comfortable and safe. We can share all our feelings. After only a few hours of sleep we headed to the beach. Grandpa also came back for a last visit. The kids played and we had more girl time. We met up with good family friends adn Alex loved having Nikki to drag in the water with him and Cayman. (So did I!) Buggy was so brave. For the first time in his life he went under the waves without crying. After the beach we headed back to Mimi and PopPop's to jump in the pool before Weath and Cayman had to leave. Once again my brave boy put his face in the water. What a HUGE breakthrough! After tearful goodbyes, we spent some more time swimming with Mimi, PopPop and Grandpa.

Monday Me, Bug, Mimi and Grandpa went to the outlets to get Buggy some new crocs and a few new outfits. Then it was a quiet afternoon. ANd my Dad's famous eggplant Parmagiana for dinner. Ummmm!

Tuesday Grandpa left and Mimi, Alex and I went to meet SueSue, Peter, and Nikki at the beach for our last time. It was a perfect day. We enjoyed our last day together. WE went for dinner with some neighbors/friends and then headed to the creamery for ice cream and to give Ms. Sheila hugs goodbye until next year. The only bad part was that we weren't able to meet up with Heather, Derrick and the kids which we had been really looking forward to.

Wednesday I awoke in tears thinking about the goodbyes to come. My Mom is my closest ally and supporter. My most heartfelt wish is that we could live closer. The relationship between her and Alex is magical and warms my heart to see (even if she does spoil him rotten). I hate the months that stretch between visits. Alex and I wait all year for this special trip where we all get to be together for 3 uninterrupted weeks. And so no matter how hard it is for us to travel and no matter how inconvenient it is for Mom and TC we all long for the days of July when we can be together.

Mom and TC- Thanks for opening your home and making it ours. We wish we were closer so we could do it more often. Alex and I love you more then we can say.

Dad- Thanks for always making the effort to see us. Thanks for being generous and making sure that we get to see Jen and Mom too. But most of all thanks for the eggplant!!!!!

Jenn and Skye-Skye- We love you guys. We are so happy you were able to come up and see us. Even if the boys fight more like brothers then cousins.

Weatherly and Lisa- I love you guys. Thanks for taking the time out of your busy lives and coming all the way to Mom's so we could see each other.

To Aunt Patti, Bobby, Penie, Sue-Sue, Peter and Nikki- I am so gald we got to see you! I love you all.

To all my friends I didn't get to see....I pray that we will see you next year. I miss you all.

So out of NC and back to HOT TX! After a day of travel on Wednesday, I was fortunate to have our old nurse Theresa come help out on Thursday while I tried to clean, unpack, do laundry, make meds, refill supplies and prescriptions, go through mail and the list goes on and on. It was so nice to have the help from someone who knows our routine and how I do things without any instructions. Theresa- I appreciate you changing your schedule to help us.

Yesterday was my birthday and thanks to good friends I had a really special day! We went to the circus for Buggy's first time and he LOVED it! He loved everything from the animals to the acrobats. He sat with a grin plastereed to his face. After the circus we went out for Mexican. Yum! Kelly, Bob, Walker and Wyatt- Thank you so much for making my birthday so awesome. I love you guys!

Today Grandma (Bruce's Mom) flies in and tomorrow Aunt Cassie comes. We are so excited. It has been way too long. They will soak up every moment with this litle angel.

As we reach the middle of August we ask once again for prayers for Bruce to find a GREAT job with good benefits. We are all so emotionally drained from the constant worry about money and how we can afford to keep Buggy's precious insurance. In the last week Bruce has gotten a few bites on his resume and we remain hopeful that one of these is his PERFECT job. We also ask that you pray for Buggy's health as we have had some increase in seizures over the last few weeks.

We love you all and thank you for the blessing you are in our lives.
Ali

PS- I will post pictures soon.

Another Great Week!

Our time in NC is flying by! We will be so sad to leave on Wednesday. It is always so much fun to spend time with our family and friends.

Monday we had a visit with Lisa (one of my college roommates and good friends) and her two adorable girls. Alex loved swimming and running through the sprinkler with Mary and Sarah Louise. He would have loved for them to stay for days. Thanks guys for being so flexible and driving down to see us.

Tuesday we went back to camp for the morning. Alex learned all about Boat safety and sea turtles. I loved to watch how attentive he was. He followed directions and listened with the best of them. It makes me realize what an awesome student he would have been could he go to school. After camp we headed to the Calabash Creamery where we met up with two incredible ladies. Sheila (the manager) and Christy (the owner) were gracious to give us a tour. Alex was able to smell all the flavors of ice cream, check out the freezers (his favorite part) and even make a batch of ice cream. If you are ever in Calabash, NC the creamery has the best ice cream ever! Thank you ladies for making my Buggy feel extra special.

Wednesday we had a super quiet day which was much needed! we did head out in the evening to listen to local ghost stories. Unfortunately, it was more geared to adults then kids.

Thursday, we went on our annual outing to take pictures. We have taken pictures at the same place since Alex was two. It is so neat to compare the pictures from year to year. We even have some of the same poses from each year! Alex was a trooper and took good pictures for me which always makes me happy! We had another quiet afternoon.

Yesterday, we headed south to Myrtle Beach to see my Aunt Patti, my cousin Bobby, his wife Penie and little boy, Anthony. We had such a great time. It was so good to see more family and to meet Anthony (who is adorable). Alex loved "Uncle Bobby". We all jumped waves and built sand castles and just enjoyed each others company. I hope we all get together again before so many years pass!

Today, another of my best friends from College is coming down. Weatherly and Cayman (her daughter) always come spend a night at Mom. Alex and Cayman love each other and ask for each other all year. They always play really well and allow me and Weath to sit around, drink wine and chat without too much interruption. What more could a mother ask for? We are excited to see them and take them to the beach tomorrow.

The excitement continues as Grandpa comes back tomorrow. Alex and I can't wait to see him and get him to cook us our favorite eggplant parmigiana. And we have one more set of friends to see. Hopefully, I will get one more update in before we head home.
Ali

No words Necessary!

But of course I will add some! As you can see we are having an awesome time. Grandpa was here for 5 days and Aunt Jenn-Jenn and Skye-Skye were here for a week. We spent 2 days at the beach, swam in the pool, went to the serpenterium, went to camp, went on the ferry and went to the amusement park! All while being sure Alex got a nap every day! It is always nice to have our family together, but I must say it is more peaceful when Alex and Skye are apart! The boys love each other dearly. They are just like oil and water. If one says black, the other says white. So there was quite a bit of arguing. Alex was really sad to see them go though!
This week is a quieter week and the chance to see good friends. Two of my closest friends from college are coming down. We will also see my Aunt Patti and my cousin, his wife and baby. I can't wait to see them. It has been TOO long.
The beach near Mom's house does a little camp outside from 10-12 every weekday morning. They do relay races, art projects, storytime and learn something. We took Buggy and Skye last week and they loved it. So we plan to take Bug again this week one day. We are also excited about a special day at the Calabash Creamery. Last year, we met my good friend Heather and her (very large) extended family at the creamery. There were lots of kids and they were all "smelling" each others ice cream thanks to Buggy. When Mom got up to the counter to pay, the very confused lady asked why the kids were all smelling there ice creams. She explained that Alex couldn't eat and smelled foods instead. The woman was in tears and refused to charge us for Alex's ice cream. She graciously offered to give us a tour o the creamery sometime and show Alex how they make ice cream and let him smell all the different flavors. So Tuesday, we are going for our tour. Alex is very excited!
We have scraped together funds and I am in the process of ordering Alex's curriculum for this year. We are both excited to study world history and learn about different cultures. I hope that Alex continues to love to learn and soak up knowledge.
One sad note...our "new" nurse that had been with us since the end of May that we all LOVED gave her 2 week notice. We don't really understand why and have tried to reach out to her and work things out, but she has not responded. Please pray that we can find someone we love to replace her. I desparately need the little bit of a break that it affords me!
Few...I think that is all for now.
Ali