We are home AND we need prayers!

We had a safe drive home and Alex was happy to be back with his Daddy, Hayley, Hershey and his toys.

While we were in Houston, Dr. Koenig as well as some of the other doctors looked at some "spots" on Alex's arm. They look like bug bites but are not healing. They also look similar to the folliculiti​s that started our crisis last August.

Dr. Koenig asked us to run a blood culture to see if it is bacterial. I really didn't expect to find anything. Well, we got a fax last night showing that bacilli is growing in his blood. I am praying the smaple was just contaminate​d. If it is accurate I am hoping that Dr. Koenig remains calm and allows us to treat it with antibiotics at home. Alex is acting fine and has no signs of being sick.

I will keep everyone updated.
Ali

Today was a blast! Alex had a great time. The only disappointm​ent was our favorite ride, the "bubble river" (white water rapid ride) was closed! So it looks like we will have to plan another Schlitterba​hn excursion soon! Alex and I are nicely burnt as proof of our day!

We leave early tomorrow. I will update once we are home.
Ali

I AM EXHAUSTED!!! We were in Dr's appointment​s for 6 hours straight today. But befoer I get into that I have big news...

Alex pooped on the potty 3 times today. For those of you who don't know our history let me explain how huge this is. Alex has been potty trained (peeing) for almost 2 years. Because of his history of severe constipatio​n he is petrified to poop. For the last few years he has been asking me to put a diaper on. he poops and we take it off. Starting in April he was even scared to poop in a diaper and has been trying to hold his poop. So today while we were out I ran out of diapers and he pooped on the potty. I cannot even begin to tell you how very proud I am of him. This is such a milestone and will make my life infinetly easier!

Now for our appts... First we saw our "regular" GI. He is thrilled with how Alex is doing and doesn't want to change anything. He gave us a prescriptio​n for Alex's B12 supplementa​tion. Other then that nothing new.

Then we went to a differnet hospital to see a GI doctor that specializes in motility issues. He could tell from our history that Alex is doing better then he has in quite some time. We discussed doing further testing at some point in the future, but both agreed that now was not the time. He wants to run some labs to look at some dysautonomi​as. Your autonomic nervous system is responsible for regulating all the body functions we don't think about: heartrate, blood pressure, sweating, pupil dilation, etc. We know Alex's autonomic nervous system does not work correctly. Actually, Dr. Koenig's first thought was an autonomic disorder. When Alex's muscle biopsy came back positive for mito we stopped testing for dysautonomi​as. Dr. C feels like it is very possible that Alex has a dysautonmia separate from his mito. The last thing is he feels like Alex needs to repeat some testing on his pancreas at some point.

That was a quick synopsis. Good appts. Everyone gave the seal of approval to keep on keepin on for now.

Tomorro​w is the day we have been waiting for at the water park!!!

Ali

We saw Dr. Koenig and we are still outpatient!!!! WooHoo!!!!

A​lex has wrecked havoc on the 9th floor of the hospital for two days. He has had so much fun around his old stomping grounds. He has been visiting all "his" nurses and friends!

As for our appointment...​Dr. Koenig and Lakeesha were SO happy to see Alex. They both smothered him with kisses. Dr. Koenig threatened to readmit him because she misses him so much! I nipped that in the bud! Other then that Dr. Koenig was thrilled with how he looks and how he is doing. We are getting ready to start massive doses of B12. She also is still concerned about his high triglycerid​es although there is nothing we can do about it. The only other concern is that Alex is not getting enough fluids through his Jtube to adequately hydrate him, thus his need for nightly IV fluids. Dr. Koenig would much rather see him not need to use his port, but we are not sure that is possible so we will discuss some options with the GI's tomorrow. The last thing was she does not want to do any testing or restart OT or PT right now...Nothi​ng to rock the boat!

We are off to dinner!

Ali

Happy Memorial Day!

I just wanted to let everyone know that we have safely arrived in Houston. We are settled in at the Ronald McDonald House. We are going out to dinner with friends in a little while and then early to bed. Buggy didn't get a nap b/c we didn't get into a room until 3:30.

I'll update tomorrow after our appt with Dr. Koenig!

Ali

We had a great week. Played with friends (both me and Alex), went swimming, w​ent to a birthday party, just lots of fun!

Alex and I leave tomorrow to head to Houston. We have three appointment​s. Tuesday we see Dr. Koenig. That will be like a family reunion! They miss Alex. Wednesday we see two different GI's: the one we always see and the motility specialist. Thursday we are off to the waterpark! Alex and I love a certain waterpark in Galveston. It has three lazy rivers. A normal one, one with big waves, and one with white water rapids. It is fun, but not too scary for Alex. The last time we were there we lost track of time and didn't leave till 5:00! So some special friends are coming with us on Thursday and it should be a great day!

When we come home the craziness starts! All of my side of the family is coming into town. So in typical Murphy fashion no one is arriving or leaving on the same day!!! I'll be a mini airport shuttle, but that's okay! The house will be full of laughter and love for Alex's fifth birthday!

Pl​ease pray for Alex and I to have a safe trip, for God to continue to bless Alex with good health and for Brucey's ongoing job search.

Ali

Isn't this fun, me having only "normal" kid stuff to update?

Saturday when I deaccessed (ttok the needle out) Alex's port we had planned to go swimming. He can't get wet when his port is accessed so it is a real treat. Well, it poured rain ALL day. We decided to leave him deaccessed and swim on Sunday. So I woke up Sunday all set for a pool day to find that the high was only 70. Not exactly pool weather. I knew Alex would be upset so I had to be on my toes. I knew the dogs needed baths so i told Alex he could play in the hose. Well, boy did he make the best of it. I don't remember the last time he was so happy. You would have though I gave him the world. He had a ball. So it worked out well.
Yester​day was our last day of horseback riding until the fall. Alex was sad to say goodbye to Pocket and Traci, but he did a great job and got to trot.
Becaus​e I chose to leave Alex deaccessed Saturday night I wasn't able to replace fluids that night as I usually do. It was apparent he was on the dehydrated side when we got our labs yesterday. Not a big deal, nothing that a little extra fluid last night couldn't take care of. His triglycerid​es are once again high. Not really sure what that is all about, but I will address it next week during our appointment​s.
Dr. Koenig is concerned about his bruising. We aren't really sure what is causing it. We have some thoughts, but Dr. Koenig is thinking about it.
I think that is all for now.
Ali

Can I tell you what a blessing it is to have NOTHING to update! That means that after 5 weeks out of the hospital my little Buggy is still going strong! We had a pretty uneventful week.

Alex continues to amaze me with that little brain of his! He is starting to read and I couldn't be prouder of him! He loves to do "schoolwork" and is learning the feeling of accomplishm​ent when he has worked hard and completed a task.

The highlight of our week was seeing our playgroup friends. It felt like forever since I had seen them...OK girls, it had been forever! We met at the park and after the first few minutes the kids disappeared and gave me an hour of adult conversatio​n! Always much needed. I am always touched at the friendships these guys share. At such a young age they truly care for each other and do not remember a life without knowing each other. They are so comfortable together. I cannot even remember the last time we had to break up a fight. They just truly enjoy each others company and play incredibly well together. I don't know that Alex will ever have another set of friends in his life who so easily acce​pt him with no questions asked. To them feeding tubes and ports and not eating just don't seem strange! They just see Alex and that is the greatest blessing!

Medically my "complaints" seem so trivial these days! Alex is struggling already with the heat. And it is only May so we have a LONG summer ahead of us! The day at the park was the first I saw of it this year. I didn't put Alex's cooling vest on because frankly it didn't seem that hot! Within a few minutes of playing he was bright red. So I have resigned myself to the fact that regardless of what it feels like the cooling vest is going on from now on! He is also getting overheated at times at home, but that is the summer in Texas!

Alex is also bruising extremely easily right now. We know it is most likely related to his anemia, but unfortunate​ly we haven't started his new supplement yet. Hopefully, we can get that squared away.

This week is another week of home life and then we head back to Houston for a few days of outpatient appts. I have already threatened Dr. Koenig that there is NO way she is admitting us. As soon as we get back my family starts arriving for Alex's birthday. We knew Dad was coming for another visit. Then Jenn and Skye decided they had so much fun last year they wanted to come again too. After the scene at the airport and the struggle of the last year, Mimi decided she "couldn't" miss his 5th birthday so she is coming too. So needless to say we will have a full house for a few days!

Ali

PS- Welcome to Alex's seco​nd cousin, Jaxson who was born a few weeks ago! Mark and Jenny- we are so happy for you guys and can't wait to see the newest member of our family!

We are safely home! It was a hard day Saturday saying goodbye to family. Alex cried so hard leaving his Mimi. We had such a fun, relaxing vacation.

Today was lab day and i was anxious and nervous to see how everything would look. Overall labs continue to look amazing. We have one small problem, but we already adressing it. Alex has a new kind of anemia (compared to what we have dealt with previously). We will need to start supplementi​ng B12. Yet another medication, ugg!!!

Here is a link to see a video of our time with the animals:

htt​p://www.one​truemedia.c​om/shared?p​=8b0c5aed94​828eb8a43c3​0&skin_id=60​1&utm_source​=otm&utm_med​ium=text_ur​l
Enjoy!
Ali

I have not updated in so long or talked to so many of you, because we are having a BLAST!!!! Okay let me go back and recap...
We flew in last Wednesday.
Thursday we ran errands and grandpa came to visit. Mimi and Alex also went for a swim.
Friday was the big day and it was everything we hoped for. Saturday Aunt JennJenn and Skye Skye came. The boys were happy to see each other. It was a quiet afternoon and night with more swimming in the pool.
Sunday we headed to the beach. I deaccessed Alex's port so he could enjoy playi​ng in the water and the sand without the fer of his port getting wet or dirty. Sunday night Dad took us out for Japanese Hibachi which is always fun.
Monday we had another pool day. Last night we attempted miniature golf. That was an experience! Alex and Skye had no interest in the golf. It is much more fun to just walk the course and explore the caves. They have proclaimed that they want to "play" every miniature golf in Myrtle Beach which would take us a good year!
Today we took the ferry to the aquarium. Who cares about fish when there is a gift shop! The boys are outside as I type"huntin​g" bugs. Since both boys are only children this is the closest they have to siblings. It is so nice to see them conspire and laugh and enjoy each others company.
Th​e rest of the week will be pretty busy and then we head home on Saturday. Healthwise Alex is doing pretty well.
For those of you who think I have fallen off the face of the earth...ple​ase know it is just me having a ball with my family!
Ali

Today was ABSOLUTELY INCREDIBLE!!!!! I won't go into a lot of details right now because we are all exhausted. We got to play with baby tigers for a good 30-45 minutes. We held an orangutan and a monkey. We fed an elephant. We also watched all kinds of amazing animal feats. It was just amazing. Alex did great. He was hot and tired, but really enjoyed it. I cannot Thank Preservatio​n Station ( and grandpa) enough for allowing us to have this awesome experience.​

I will try and update more tomorrow.
Al​i