Alex and Maddy

Alex and Maddy

Monday, May 22, 2017

Surgery Update

I will keep this short as I am really tired. It has been a long day.

I'll start with the positives: Alex's new port went in with absolutely no problems and is working beautifully. The PICC line was pulled and Alex is so happy to have his left arm back to normal! The Echo looked good. They saw no signs of endocarditis (infection in the lining of the heart).  They want to review everything one more time, but we are really close to stopping our IV anti-fungal treatment.

The GI stuff was not quite as positive. His colon is HUGE. Dr. O said it over and over again. He has been so full of gas for so many years that his colon is completely dilated. It is without a doubt a big contributor into our feeding intolerance. Dr. O took biopsies to look at the whole colon, but especially the rectum. He needs to rule out Hirschprung's Disease. The biggest shock of the day though was that Dr. O found a growth outside of Alex's colon (pushing into his colon).  It could be a cyst or a tumor. Both Dr. O and Dr. I (surgeon) feel like it is benign, but it will require more testing and likely surgery to remove it regardless of what it is. We have made the choice not to share this with Alex right now. He is emotionally exhausted from worry over the past month. He needs/deserves to go on our trip and be a kid and have fun. We will address whatever we need to when we get home!

Thank you to everyone who lifted us up today. We felt the love and prayers.

Ali

Sunday, May 21, 2017

A Rough Few Days

The beginning of last week was pretty quiet. We are keeping everyone pretty low key so no one gets sick before our big trip to Orlando!

Maddy had therapy. Alex had Violin. But we also had lots of down time at home. Thursday we headed to the hospital for Maddy Moo to have labs drawn and her sweat test to rule out Cystic Fibrosis. It was a long morning, but Maddy did really well. We have not received any results from that testing yet.  Friday was really rough. Alex had a test called Anorectal manometry. I will spare you the details, but it tests the nerves and muscles in your rectum. It was painful, but worse emotionally then anything. I did get a call Friday afternoon letting me know that it was abnormal and that Dr. O will be ordering some more testing/procedures.

Maddy working hard at Therapy. She always keeps Suzan and Nicole on their toes!


Maddy doing her sweat test

Last night, I was lucky enough to get to have a girl's night out with some awesome ladies who have been so supportive to me and our family over the past few years. It was a nice break and we had some much needed conversation and laughs.

We had/have some really exciting news about our Maddy this week. One is she is really trying to potty train. She REALLY wants a big girl bed and knows she will get one if she can consistently use the potty. She has been wearing panties most of the time since Thursday and is really trying hard. We also found out that Maddy will be attending the preschool at our church two days a week starting in the fall. We are so excited for her to get this opportunity and so grateful to our church who is always willing to work with us regarding accommodations for the kids.

Tomorrow will be a rough day. Alex and I will head to the hospital first thing in the morning. He has multiple things happening while in surgery. Our surgeon will start and place a new port-a-cath and remove the PICC line in his arm that we have been using over the past month. The Dr. O will get his turn. he will repeat the test they did on Friday, he will do a colonoscopy and take biopsies and he will manually remove the air that has been causing the pseudo-obstruction is his intestine since January. After they are both done in the OR, he will be transferred to the new Heart Center to complete the Trans-Esophageal Echo. They are hoping everything will be between 2-3 hours. Please pray for us tomorrow, especially Alex who is so nervous about he surgery. He hates getting a new port because he knows it is painful for a bit after especially when needing to access it.

Yesterday, Alex auditioned to take part in the Summer Theater Workshop put on by our church. They spend three weeks preparing a show and then have three performances at the end.

Through all the struggles we see so many blessings. We see kindness and love. I think one of my very favorite things to watch is to see my babies encourage and love one another. Alex is always Maddy's biggest cheerleader. He loves her so much and always lets her know. Maddy has become quite the nurturer and is so sweet when Alex is going through anxiety or hard testing. She wipes his tears, brings him tissues and tells him over and over, "It's okay Bubba. I will always be here with you". Their bond is amazing and I am so glad they are so close despite their 10 year age difference.


It has been really fun over the past few weeks to get so many messages from friends who have seen Maddy and Alex in local Kroger's. They are Champion's For Cook Children's Hospital and Children's Miracle Network. Alex just thinks it is cool that he is "famous"!









Thanks to everyone who has been with us and helped us over the past month. We are so excited to get tomorrow over with and turn our focus back to some fun times!

Ali

Saturday, May 13, 2017

Trying to get back to Normal

This week has been all about trying to get back to normal. It has been really hard for all of us to get into our routine! Maddy was back to therapy this week and we had a few Doctor's appointments. On Tuesday, Alex had an appointment with Infectious Disease. She was happy with how he is doing and decided we are experienced enough at doing IV antibiotics that they don't need to see us weekly as previously planned. That was a nice surprise!

On Friday we saw GI with both kiddos. I was pleased that he had a plan on trying to sort out both. For Alex we are slowing restarting feeds at half strength. Dr. O is also going to increase his calories quite a bit in his TPN as he has lost 10 lbs since January. On Friday Alex will have some unpleasant testing to see if we can find a cause for some of his lower GI issues. Then Dr. O will piggyback on his surgery next Monday to try and manually remove some of the huge amounts of air in his colon. He may also perform another procedure depending on the results of Friday's testing.

Maddy has only gained 1 pound in the past nine months. She has also started vomiting at night. Dr. O wants to look at her with fresh eyes and make sure we are not missing something before assuming she has the same issues as Alex. He ordered a ton of labs, urine and stool tests. She will also have a sweat test to rule out cystic fibrosis and a gastric emptying scan. Based on those results he will determine the next steps.

Please continue to pray for us as we are all drained after the past month and have another tough week with the testing on the kids this week.

Ali

PS- Sorry for the short, boring update!

Saturday, May 6, 2017

Update and LOTS of pictures!

We were discharged on Wednesday afternoon. We are so happy to be home. No matter how many times we have been hospitalized I forget the sheer exhaustion that follows! Add to that the fact I have been under the weather and Alex's care is more extensive right now and I am pretty tired.  We have so much to be grateful for. Most important being Alex being okay despite two really nasty bugs growing in his line, bloodstream and heart. We had such incredible care from multiple doctors who worked together to ensure Alex's safety. While the doctors cared for Alex's physical health, so many others cared for us emotionally. We were showered with love and blessings beyond what we could have imagined. During the hardest of times the love and caring of others kept us going. There are so many who deserve thanks and you know who you are, but I have to say a special Thank you to my mom who is always there for us. As soon as we realized how sick Alex was she jumped on a plane to help in whatever way she could. The selflessness and love that she shows on a regular basis mean everything. I know that she loves my babies more then anything, but knowing that you ahve someone you can count on is priceless.

Alex still has a ways to go towards recovery. He is still struggling with pancreatitis which means he can't handle anything through his tube right now. Having to rely on everything IV is a little rough on all of us. He is also still on both antibiotics and antifungals. He has lost ten pounds since Feruary (which he cannot afford) He is struggling with high blood pressures and is just overall still weak. Please continue to pray for him to feel better!

Shortly before Alex got sick the kids had two photo shoots. One was for the hospital to be used for their Children's Miracle Network Marketing. The other was our annual bluebonnet session. (Thank you Tina W. for always capturing the kids personalities) I have a host of other pictures as well, but some of those may have to wait!

Thanks for all of the love and prayers.
Ali























Tuesday, May 2, 2017

Heading Home...for Now!

I am so happy to announce that we are heading home tomorrow!!! After the meeting of the minds yesterday they all came to a consensus. We know the port cannot be replaced right now. We also know our length of treatment will depend on whether the yeast is actually present in his heart. But for right now it doesn't change anything. We will head home tomorrow and continue the same treatment we were following here. Because Alex still has Pancreatitis and cannot feed he will be on IV fluids/TPN around the clock He will get his IV antibiotic 3 times a day and his IV antifungal once a day. Then we will come back on May 22nd for his port placement and the Transesophageal Echo. At that point we will determine how much longer we will need to treat. They told me depending on the echo it could be months.There is also the possibility that we will need to do a heart cath at some point to try and remove the yeast.

13 years ago, I walked into a meeting of the Keller-West Moms club, desperate to meet people before Alex was born. I made some of the greatest friends who have been a rock for Alex and I for so many years. 3 1/2 years ago I rejoined the same group so Maddy could also make lifelong friends. It has been harder for me to make it to activities and meetings, but I have watched this group of ladies give selflessly over and over. Today we were the recipient of the love they give so willingly. I am so lucky to call these women my friends and astounded about the way they have been there for us. Twice we have been forever changed by this group of moms who come together for fellowship.

I cannot begin to express how grateful we are. The kindness and love that has been showered on us has been amazing. We feel so blessed to how so many incredible people in our lives!

Ali

Monday, May 1, 2017

Working on a Plan

Sorry for the lack of updates. It is hard to know what to say when so much is still up in the air.

I will start with Mom...She was discharged this morning and is doing MUCH better. She still isn't eating a ton, but is close to back to normal.We decided that it would be easier for her and Maddy to be home and in their own space so I took them home this afternoon. I ran to the grocery store and got them what they needed for a few days.

Alex had his repeat echo this morning. He was a little mad at me at first that I hadn't told him what was going on, but he got over it pretty quickly.  I haven't seen the official report, but the tech did not feel like she got any views that were going to be definite that what they are seeing is not yeast.

We saw both our hospitalist and Infectious disease doctors. Everyone has agreed it is not safe to replace the port right now. So we know we will be going home with the PICC line (in his arm) for some time. We have already been told that we will most likely be treating for 6 weeks with the antifungals. (We also still have another week on the antibiotic).  The main question at this point is if we need to sedate him to do the trans esophageal echo or just treat for now and look at his heart when we go to replace the port. The Infectious Disease Doctor was going to call the hospitalist, a cardiologist and our immunologist from Houston and get everyone's thoughts before making a final decision. She hopes to have a plan for me by tomorrow. Regardless, it looks like we should be going home by the end of the week as long as Alex behaves!

Because he has a mild case of Pancreatitis we are not doing feeds so he will go home on TPN/IV fluids pretty much around the clock. We are hopeful we start to see some improvement as we have 33 days till we leave on our big trip!

Thank you to everyone for you thoughts and prayers.
Ali

Sunday, April 30, 2017

Waiting Game

All is going well here. Alex is feeling better overall. He is still nauseous and feels cruddy off and on, but such a huge improvement from earlier in the week. He has not had a fever since Thursday and his vitals all look good. I am not really sure what the week holds. When you have multiple doctors involved sometimes they all give you info that is slightly different. So I will update with what I know, but please keep in mind that a lot is "what ifs" right now, not set in stone so it may change.

Tomorrow Alex will have a repeat echo to look at a valve that enters the right atrium of the heart. That is where they think there may be a pocket of yeast. If they still see it, then later tomorrow or Tuesday he will be sedated for a trans-esophageal echo so they can get a better look. If they do decide it is yeast they will treat more aggressively and for a much longer time.  This is where it gets a little sketchy. Some of the doctors are saying if that it is yeast we can not replace his port. Others feel like we can replace the port. There is also some discussion that at some point he may need a heart cath to try and remove it.If they determine it is not yeast then the hope is to replace his port towards the end of the week.  At this point, Alex knows NONE of this. I did not want him to sit and stress about it all weekend. I will sit him down tomorrow morning because he will know something is up when he is having another echo. We will hopefully know more tomorrow.

As for my mom...I've had lots of questions. We had a great day on Friday. She stayed with the kids so I could run home and pack up some more clothes and do laundry. She was craving Chinese food so I told her I would bring some back with me. We had dinner, talked, laughed (boy did we laugh) and settled down to go to sleep. Shortly after we went to sleep she got extremely nauseous and started to vomit. She continued to vomit off and on ALL night. By 5:00 AM it was clear that we needed to do something. I asked our nurse how I could get my mom next door to the adult hospital. The security guard was kind enough to drive her over and our nurse rode with her to make sure she got into the ER safely. (Have I mentioned how incredible our hospital is?).  We really thought it was food poisoning based on how sick she was/the timing. Her labs do not look like she is "sick". Her initial testing looked like she might have a back up of stool but they gave her something and despite being on phenergan and zofran around the clock she is still nauseous. She is currently in their observation unit, but since she still cannot keep anything down they are planning on admitting and consulting GI. I have walked over a few times and checked on her. (It is literally across the street). She sounds SO much better today, but clearly cannot discharge her until she can eat and drink.

Thank you to everyone who has offered support in so many different ways. We are so blessed to call you all family and friends! Please pray for Mom to feel better and for clear cut answers tomorrow, but mostly for my boy's health both physically and emotionally as we go through this week.

Ali

Friday, April 28, 2017

Setbacks

Yesterday was definitely a day of ups and downs. Alex woke up feeling a bit better and was a lot less anxious. Unfortunately those positive vibes didn't last too long. Alex started to feel pretty cruddy again and by 7:30 his temp was up over 102. With the fever also came some anxiety about knowing that another surgery is upcoming in the near future.

The morning also brought with it more testing. We went down stairs for both an ultrasound of his liver, kidneys, spleen, and stomach. Then they took us over to echo to look at his heart. Once again child life came through in a huge way. They shuttled Maddy off to the playroom so I could go with Alex and Maddy would not be bored sitting in tests.

We got settled back in the room and waited for Mimi! Mom got here shortly before 3. Alex and I were both so excited to see her. Maddy was still napping, but we let Mimi wake her up. Maddy quickly shuttled Mimi downstairs for a medical play activity.

I was a little surprised when I got a knock on the door around 3:30 and a second visit of the day from our hospitalist. We stepped into the hall. (Alex who has always been an incredible advocate for himself, has asked that I not speak to the dr's in the room because it is "freaking him out"). Dr. H let me know that they had some results from the earlier tests. Thankfully his abdomen looked good. They did not see anything that looked questionable. It was also good in that they feel like they got enough images to say that. Alex's GI system is FULL of gas which makes it nearly impossible to see anything on ultrasound. Unfortunately the news on the echo was not as positive. They see what "may" be a pocket of yeast at the opening of the heart. They tried to go back to old echo's and see if they could confirm if it is something new or just part of Alex. They were not able to see an exact image where they felt like they can rule it out. The plan right now is that we will repeat the echo on Monday to see if they still see it. If they do, he will be sedated and they will do a transesophogeal echo. The treatment would be the same, but if he has endocarditis we would treat much longer. I was caught off guard. I will hopefully be able to ask more questions today.

Our GI also came by yesterday. We all wish there was more we could do to help his GI system so we wouldn't wind up in situations like this. We just don't have a whole lot of options at this point.

Our last visit of the day was from the ophthalmologist to look for yeast in Alex's eyes. He did not see anything concerning. This sweet man was about to leave and asked if it would be ok to pray with us. He was so kind and caring and we will gratefully pray with anyone!

Alex did spike another temp last night, but his vital signs looked much better then with previous fevers.

I had what I thought was allergies. But as the day went on I felt worse and worse. Weeks like this are brutal on a Mama's heart and I think my body is calling uncle! I have a nice little cold and no voice at this point. But I did take nyquil last night, so at least I slept.

A special thanks to my Mom who dropped everything to be here to help. I am so lucky to have been raised by a woman who continues to love completely selflessly no matter how old I am.

We are feeling so incredibly grateful for all the support. We feel the love and prayers. I wish I could recognize all of the people who have stepped up to help in so many different ways. We are so blessed by all of you!

Ali

Thursday, April 27, 2017

Scary Day

Monday night it appeared as if we were going to be discharged home on Wednesday to continue IV antibiotics for 2 weeks. When the infectious disease doctor logged on Tuesday morning to start working on home health orders she realized the culture from Saturday night was growing yeast. (In the world of central lines, yeast is the scariest/worst thing to be growing) By the time she made it up here Tuesday afternoon, Sunday's culture was also growing yeast and by night so was Monday's! The ID doc started a strong anti-fungal and we were still hoping to try and treat without having to remove his port. We were all aware that the reality was it would most likely need to come out.

Yesterday morning Alex woke up and immediately told me he wasn't feeling great. Shortly, after we checked vitals and his temp was over 104. With him declining and knowing how sick yeast can you they decided the port had come out...and pretty imminently. The hospitalist left to call a couple of other dr's and order labs and before she made it back in the room, surgery was already here to assess him. Alex was feeling bad and extremely scared. It is heartbreaking when your child knows that central line infections can kill them. When they have lost friends. The fear is real and it is brutal. Alex told me he over and over that he didn't want to die, that he wanted to get married and have kids and retire. He was worried about who would look after Maddy if he was gone. My Mama's heart was battling its own fear and breaking for my precious boy who has to carry so much in his head and heart. So many scars that will always be there. Poor Maddy was also scared and knew she was being shuttled off to someone. I tried frantically to reach out to a few "friends" in child life who I knew that Maddy would be comfortable with and tried to comfort both my babies.

I need to pause for a moment to acknowledge how incredible this hospital is and why we love it so much! The staff here has been incredible about Maddy staying with me and she has surely entertained the 4th floor. Yesterday in the frantic rush of getting Alex ready, Terri, the child life specialist for the floor came and grabbed Maddy so I could focus on Alex. She then arranged for volunteers to be with Maddy ALL day so my attention was where it needed to be. She went to drumming circle, played in the playroom, watched a movie, did stickers, and loved on miniature horses. They fed her lunch after checking with me to see what she could have. It was truly family centered care at its best. They realize it is not only the patient who is affected. They knew what was necessary and they made it happen so I could care for Alex without having to worry about Maddy. And she had a blast! Not to mention how awesome it is to have doctors who realize the role the parents play and are willing to DISCUSS treatment and not just dictate orders.

When we got down to OR holding Alex was still really nervous.  So our beloved Kizzy and Ralphie (after making a quick detour to check on Maddy) came and hung out...as in Ralph got in the bed and cuddled. Not quite as good as Zoey or Mia, but a close second. The surgery seemed like it took longer then I thought it should, but I think a lot of it was the holding. We left his room around 11 and got back around 4!

Shortly after getting back to the room he started to decline again. He fever was back up around 104, his HR was extremely high, his blood pressures were low, her perfusion was bad. Overall, he just looked BAD. Similar to the ER on Saturday. The doctor and I made the decision to give him a huge dose of steroids since his body can't make cortisol. (He was already on IV steroids, but this was in addition) She also gave him a fluid bolus.

Infectious disease followed her in and she let me know what to expect over the next few days. Today he will have an echo of his heart, ultrasound of his liver, kidneys, spleen and stomach, and at some point an ophthalmologist will assess his eyes. They are looking to be sure there is no yeast anywhere. Yeast likes to attach to organs and hide. We need to be sure it was "only" on his line!

Because Alex was still not looking good they called the doctor back. They had switched to the night time on call hospitalist and I was really happy when my favorite hospitalist walked in. There is a trust there and we communicate/collaborate really well to make sure Alex is getting the best care. He did not like the way Alex looked and quickly ordered another fluid bolus. I mentioned that when Alex is anemic he runs really high HR's so we may give him some blood today depending on what his CBC this morning looks like. After that bolus, he started to look a little better so he ordered one more fluid bolus. Somewhere between the 2nd and 3rd bolus his fever broke. His HR is still pretty high, but not scary like yesterday.

This morning he is up and talking to me and feeling a little better. We will be inpatient for a minimum of another week. We need to be sure we clear this infection before we can place another port.

I am so very grateful for our village! The prayers, the support, the love we have felt has kept us going this past few days. THANK YOU!

I am so HAPPY that Mimi is flying in today to be here for me, her boy and to help with Maddy.
I know she can't wait to hug her best boy.

I am doing my best to weed through messages, respond and keep everyone updated, but please be patient with me as my focus is on my babies and making sure they are both cared for.

Ali

Monday, April 24, 2017

Hospital Update

My next post is going to be full of pictures. I had so many pics I wanted to share, but this update is coming from the hospital and I am on Alex's computer!

Let me back up to where I left off. Mimi and PopPop left on Saturday the 8th. It is always hard to say goodbye. The kids loved their time playing with Mimi, especially Maddy who wouldn't leave Mimi alone for a minute.

On Sunday, the 9th we were privileged to attend a Texas Rangers Game in a Suite thanks to Cook Children's. It was such a fun time for all of us. Alex brought his best friend and Maddy loved on Ralphie the whole game!

On the 10th, Maddy had her cast removed. When they repeated her x-ray they found she actually had 4 fractures! Poor girl. No wonder she was in pain. We left orthopedics and headed to the Golf Club to meet up with our "family" from the Cook Children's Health Foundation and speak about what Cook's and Children's Miracle Network means to us.

On Tuesday, Alex had an appointment with his endocrinologist who adjusted his medication in hopes of helping with how fatigued and cruddy he has been feeling.

Wednesday, the 12th, Grandpa flew in!We actually enjoyed a few days of just regular activities before the craziness started again!

Thursday we had to do another X-ray as Alex continues to struggle with GI pain and nausea. It looked worse then his baseline terrible X-rays and it was decided that we needed to see our GI the next morning. Friday we say Dr. O and he said his pain and nausea is definitely a flare-up of his chronic intestinal pseudo-obstruction. He talked about how significant Alex's GI dysfunction is and us not having a whole lot of options to improve it.

Alex has been participating in an acting and improv class since January. He has really enjoyed it and the Spring Recital was last week. Alex had a dress rehearsal Thursday night and performances scheduled for Friday night and Saturday afternoon. I was able to attend Friday's performance and was so incredibly proud of Alex. He did a great job and really enjoyed himself. He was really struggling with anxiety regarding his performance and I was so proud of him overcoming that anxiety and pushing himself to perform. His kind spirit came through as well. The center where his acting has taken place has a neat tradition of offering flowers that can be purchased during intermission. Yu write a note and the flowers are delivered to the performers at the end of intermission. Alex received three flowers (2 from me and 1 from a classmate). He noticed that one of his classmates didn't receive any. He quickly ripped a note off one of his flowers, stuck it in his pocket and presented it to her. She wouldn't accept it, but I told him that gesture means more to me then any acting performance or play. It is these little moments when I see his kindness, his love, his heart that make me so thankful I get to be his mom.

We were both heartbroken when he woke up Saturday morning with a fever. Bruce, Alex and Maddy were all supposed to attend the performance with me. Alex was so worried about letting his classmates down. When he called me up his fever was 100.9 and I was hopeful maybe he had just overdone it with two late nights in a row. Unfortunately within 30 minutes it had climbed over 102 and before we left the house was up to 103.8. By the time we were getting in the car I knew it was not good because he had really bad chills and was complaining of having visual disturbances. We got to Cook's ER and were immediately taken back. They couldn't even get an initial blood pressure because his chills were so extreme he was moving too much for the machine to register a bp. They called a sepsis alert and we had about 12 doctors, nurses, paramedics and respiratory therapists in our room. They jumped in to action and worked feverishly to stabilize Alex as he decompensated. He looked pretty scary for a bit, but we were able to get him to a point where they felt it was safe to send him to the floor and not the PICU. Before the end of Saturday we knew he had a line infection. He was still feeling really bad and some of his labs did not look good.

Yesterday we woke up to the scary news that he was growing the same bacteria that we nearly lost him to in 2010. Klebsiella Oxytoca is a bacteria that translocates from Alex's GI tract into his blood stream causing scary infections and sepsis. In 2010, he went into DIC (bleeding/clotting disorder), kidney and liver failure and was intubated on a ventilator. Luckily, this time we were able to treat quickly and he did not wind up quite as sick. It was still scary for my Mom heart knowing how serious this infection could be. He did ok yesterday, but he continued to have low blood pressures and was not creating urine like he should. He was also extremely pale and puffy. They ordered labs to be repeated this morning and luckily overall his labs are trending in the right direction. He looks and feels better today. The only negative today is his blood work showed his pancreas is flared again. However, he appears to be out of the woods. The doctors are hopeful that we can go home on IV antibiotics in a few days.

Those of you who know us know that we love our church and our church family. Our praise Band has been playing a song that has really spoken to me over the past few months. I want to leave you with the lyrics and the hope that Alex and I always use "our story" in a way that gives back and honors God.

"Life is short; I wanna live it well
One life, one story to tell
Life is short; I wanna live it well
And you're the one I'm living for
Awaken all my soul
Every breath that you take is a miracle
Life is short; I wanna live it well, yeah
I got one life and one love
I got one voice, but maybe that's enough
'Cause with one heartbeat and two hands to give
I got one shot and one life to live"

Thank you for all your prayers and thoughts.
Ali

Saturday, April 8, 2017

Update on Appointments and some EXCITING news!

This was a crazy week! We were supposed to be heading to Houston on Sunday to start a long week of appointments. However, mother nature had a different idea. We had severe storms here Saturday night into Sunday morning and Houston was expecting "damaging storms" later in the day on Sunday. After talking to friends and watching the news we could not find a window that seemed safe to get on the road. So we wound up leaving at 5:00 Monday morning in order to make it to our first appointment.

Monday: We started with Pulmonary. Alex's pulmonary testing is never great and he has one test in particular that is consistently very concerning. It is a test that measures the strength of your inhale and exhale. Alex has extreme weakness of his chest wall muscles which makes taking good breaths difficult. That coupled with his extreme GI bloating really effect his Pulmonary status. After we explained to our Dr. how fatigued Alex has been lately, it was decided that we needed to try and offer him more support. Our pulmonologist feels like it is very likely that he is working so hard to keep his O2/Co2 balanced that he is exhausting himself. He wanted to ordered a Trilogy Ventilator that can be used with a cannula to deliver positive pressure and help ease the load of his breathing. We completed some other interesting testing on both kids and set up a time to meet on Wednesday before moving on to our next appointment. next we saw our beloved, Dr. Pacheco. She is so much more then a Doctor to us. She loves the kids like they are her own and she is a doctor I can be completely candid with. She felt great about the pulmonologist's plan for Alex. She doesn't feel like his immune dysfunction is adding to his current struggles, but did add some labs to be sure she cannot help in any way. She gave me some advice on some concerns with Maddy and what she thinks we need to do. She also ordered labs on Maddy as she is watching her immune system very closely. We finally made it to teh hotel at around 4:00 Monday afternoon! Alex and I had to make a really quick turnaround for our rescheduled sleep study! I was so glad to have Mimi and PopPop with me to entertain Maddy while I quickly re-packed what I needed for the night and kept her happy while I was gone!

Tuesday: We saw Dr. Koenig, our mito specialist. Overall, she is happy with how Maddy is doing. She wants us to continue aggressive therapy to try and help with her hypotonia and myopathy. She was concerned about Alex. She increased his seizure meds (he has been complaining about feeling like he is having seizures) and checked a slew of labs to be sure nothing else is off. She also agreed with the trying to help the fatigue by addressing his pulmonary issues. This is another appointment where our Dr and her incredible staff are so much more then our medical professionals. They love my babies so much and it is so nice to be at an appointment where everyone knows you and your kids so well that you can just be you! Maddy entertained the "girls" with dances and lots of surgery, while I was able to focus on the appointment. We headed out to Kemah Boardwalk after our appointment for some fun! Unfortunately, most of the fun attractions were closed, but we had a nice lunch on the water before heading back.

Wednesday: Another busy day as we headed to the hospital early to complete labs before our appointments started. I was able to draw all of Alex's labs off his central line. I had my blood drawn (we are repeating some genetic testing). Maddy was the difficult one as they stuck her three times and couldn't get any of the labs. The lab was concerned about how dehydrated she was and wanted us to call our doctor to get some fluids for her. We just tried to convince her to drink more! But we left Houston without getting any of the labs ordered on her. We were already running late after the lab to meet up with the pulmonologist and supply company to pick up Alex's new machine, fit his cannula and adjust settings. From there we rushed to cardiology for both kiddos. For now we are just status quo there, but both kids will have echos when we go back in October.

Thursday was Alex's yearly MRI of his spine and we were excited that for the first time ever his syrinx appears a little smaller! This was awesome news.

I am always proud of my kids, but I was especially proud of Alex this week as he endured test after test that normally cause major anxiety and handled them all like a champ. The maturity he displayed was awesome to see.

I am so grateful to my Mom and Tom for all their help this week as this would have been really difficult without an extra pair of hands. They kept Maddy entertained and happy through countless appointments and long hours at the hotel.

Now for the EXCITING stuff!!!!

Alex was nominated in February for the first ever Kidd's Kids Teen Trip. It is a trip to Disney, Universal and Seaworld the first week of June. We returned from Houston to the exciting news that Alex was selected as one of the teens to attend this trip. We will be travelling to Orlando and staying at Give Kids the World. We are so excited and so happy that once again he is being honored for the incredible spirit he shows despite his challenges. We are so grateful to Mimi, Karol, the Tagordas, and Pastor Molly for writing letters in support of him. We can't wait to share more as we find out the details over the coming weeks.

Our craziness is not slowing down as we say goodbye to Mimi and PopPop and then greet Grandpa this week as he comes to visit for a few weeks! Not too many pictures this week. Hopefully more next week!

Ali

 Love how much these two love each other!

 All tests are easier when you have your sibling to help!

 Not sure he is the one who should have devil horns!

 Sleep Studies= Awesome Hair

 Appointments are Exhausting!

 Maybe the first time I have a smiling picture from Pre-Op!

 Maddy and Mimi at the Park!

 We even found some animals to pet!

Home to our sweet Mia!

Saturday, April 1, 2017

Heading to Houston

This will be a quick post as we are so excited to leave in a bit and pick Mimi and PopPop up from the airport! I just wish it was for a fun week and not to tackle a crazy week of appointments! Heading to Houston is always a mix of emotions for me. We are so very grateful for doctors who have walked this very rocky path with us, who have loved us like family, and who are so very knowledgeable about Mitochondrial Disease. But I dread the long drive, the long appointments and the exhaustion from a week of appointments like this. This week I am hopeful for some "help" as Alex has not felt well in months and Maddy is having her own struggles. Prayers for safe travels, good appointments and lots of time to enjoy Mimi!
Maddy and Atticus
Atticus is a service dog who works at Maddy's therapy center. When Maddy checks in she always says she is there to see her therapist and Atticus. Sweet Atticus comes running when he hears our voices. These two have grown up together and really are sweet together.

 Alex loves his violin instructor/mentor/friend, Sonny. I am pretty sure they spend as much time chatting as they do playing violin. It is fine with me. Sonny is the kindest, most genuine person I know. If Alex learns to be half as kind as Sonny, he will be doing good!


We said goodbye to our Zoey on Thursday, as she headed to her trainer for a month. These two are really going to miss each other! Hopefully, Zoey is a good student and comes home with even better manners then when she left!

Thanks for keeping us in your thoughts and prayers this week,
Ali

Saturday, March 25, 2017

CMN Hospitals

This week (March 20-27) is Childrens Hospitals Week. I thought I would take a minute to talk about Children's Miracle Network and how important it is. A year and a half ago I didn't know a lot about this incredible organization and how much it would come to mean to our family.  Children's Miracle Network raises money for 170 member hospitals across the US and Canada. Donations stay local and help with medical treatment, equipment, research, and other programs in the hospital.  62 children enter a CMN hospital every minute!

When we were asked to speak last year at Dance Marathon, I took some time to learn about CMN and was blown away. We have since spoken numerous times and I continue to be blown away by the people I meet and all of the ways CMN helps local hospitals. For us, Cook's Child Life Program and our beloved therapy dogs are funded through CMN. But I think the most important aspect for me is that it impacts everyone.

As a little girl and through the years my biggest dream was to be a mother. I had no idea that this is what motherhood would look like for me! I love my little family, but this is not exactly how my childhood fantasies looked! Whether you are a family like mine with a genetic condition, a family who has an accident, or a family who receives a cancer diagnosis, CMN helps us all. Sickness and accidents can impact anyone of us and bring us to the hospital. So many organizations help one specific disease or population. I love that CMN is for everyone. If you ever have the opportunity to support Childrens Miracle Network, please do. The staff, the celebrities, the volunteers are some of the most selfless, dedicated individuals I have had the honor of knowing.

As for my crew...Maddy took some huge steps forward this week as she is finally more comfortable walking!  Alex had acting and violin and continues to love participating in these activities. We have a normal week this week and then Mimi and PopPop come visit. We can't wait for them to get here next Saturday!





These last two are of Maddy with her beloved Ralphie! Ralph and Kizzy (Ralph's Handler) are Maddy's very favorite people at the hospital. Ralph and the other 4 Therapy Dogs were obtained through the Sit, Stay, Play program that is funded through Children's Miracle Network Donations.