We are hanging in there. Mom and I are starting to feel better, although we are still covered in spots. Alex started his medication today. We accessed his port and he will get IV antibiotics twice a day for the next 10 days. Alex had a reaction to the first dose. Pretty much par for the course! We are waiting to hear back from Dr. Koenig, but will most likely just give him tylenol and IV benadryl before each dose. That is pretty much it. We are continuing to enjoy ourselves and will get out and start doing stuff now that we are not contagious.
Ali
Alex and Maddy
Thursday, July 31, 2008
Wednesday, July 30, 2008
Monday, July 28, 2008
I know one thing for sure, we never have any lack of excitement around here!
First, we are having a great time in NC. Jenn, Skye and Grandpa were here for the weekend. We have been to the waterpark, the beach and the alligator farm. We even roasted marshallows!
Now for the not so good news... The day before we flew here Alex got a few red spots on his face. We weren't sure what they were but we assumed they were bug bites. I checked with Dr. Koenig and she ok'd us leaving. Fast forward to Saturday, Mom and I started breaking out in red spots. We all 3 have chicken pox! Alex has also been having some "episodes" of repetitve blinking. I spoke to Dr. Koenig today. She is VERY concerned. If we were in Texas she would admit us to monitor him. Because I am here I am watching him very closely and will leave at the first sign of Alex not doing well. Dr. Koenig's main concern is that these episodes that she feels are seizures started around the same time of all of this. We are praying that Alex holds on so we can finish our vacation.
We will head to Houston a day earlier then planned. She will do an EEG and possibly an MRI and spinal tap.
Please pray for Alex. I will keep you updated.
Ali
First, we are having a great time in NC. Jenn, Skye and Grandpa were here for the weekend. We have been to the waterpark, the beach and the alligator farm. We even roasted marshallows!
Now for the not so good news... The day before we flew here Alex got a few red spots on his face. We weren't sure what they were but we assumed they were bug bites. I checked with Dr. Koenig and she ok'd us leaving. Fast forward to Saturday, Mom and I started breaking out in red spots. We all 3 have chicken pox! Alex has also been having some "episodes" of repetitve blinking. I spoke to Dr. Koenig today. She is VERY concerned. If we were in Texas she would admit us to monitor him. Because I am here I am watching him very closely and will leave at the first sign of Alex not doing well. Dr. Koenig's main concern is that these episodes that she feels are seizures started around the same time of all of this. We are praying that Alex holds on so we can finish our vacation.
We will head to Houston a day earlier then planned. She will do an EEG and possibly an MRI and spinal tap.
Please pray for Alex. I will keep you updated.
Ali
Monday, July 21, 2008
We leave tomorrow morning... The craziness never ends! We got back the bloodwork we have beem waiting on. They found 2 mutations and 33 polymorphisms or changes on Alex's mitochondrial DNA. The next step is to test my blood. If I come back with the same changes then it is conclusive that these are the changes causing Alex's mito. One of the mutations has been seen before which is important because it might help Dr. Koenig know which organs are more likely to be effected. We have to head back to Houston as soon as we get back from NC. We will sit down with Dr. K so she can explain more of this to us. We will also see the GI, immunologist and have the Gastric emptying scan. At that point we will make a definite decision on the surgery.
I will update from NC.
Ali
I will update from NC.
Ali
Sunday, July 20, 2008
We are home!
We saw the GI on Friday. We are trying an additional medication as a last ditch effort to avoid surgery. We have also scheduled a test to be done. They are also trying to schedule yet another dr. appt with a pulminologist and a sleep study to see if his reflux is causing any breathing problems. We follow up in August. By then the GI will have spoken to our surgeon and we will make a final decision.
It was nice to see Mariah and the girls and meet Mariaj's mom, Carol. We all shared a hotel and it was just really fun. Of course we are all exhausted. Mariah and I were like two little girls having a sleepover. We talked into the early morning every night. We can't wait for October to see you guys again.
Alex and I have a quiet day tomorrow to unpack, do laundry and repack, then we head on vacation! We are so excited. We are flying into Raleigh and driving with Dad down to Shallotte to see Mimi and PopPop. Aunt JennJenn and Skye Skye will also be there for a few days. Dad and Jenn and Skye will all leave after the weekend. Alex and I will be at Mom's until August 7th and then back to Raleigh for 2 days before we head home.We will see Dad again the first wekend of August as he heads back to myrtle Beach. This is a much needed vacation for both Alex and I. Going to NC is always such a good break from medical stuff for both of us.
Please pray for safe travels.
Ali
We saw the GI on Friday. We are trying an additional medication as a last ditch effort to avoid surgery. We have also scheduled a test to be done. They are also trying to schedule yet another dr. appt with a pulminologist and a sleep study to see if his reflux is causing any breathing problems. We follow up in August. By then the GI will have spoken to our surgeon and we will make a final decision.
It was nice to see Mariah and the girls and meet Mariaj's mom, Carol. We all shared a hotel and it was just really fun. Of course we are all exhausted. Mariah and I were like two little girls having a sleepover. We talked into the early morning every night. We can't wait for October to see you guys again.
Alex and I have a quiet day tomorrow to unpack, do laundry and repack, then we head on vacation! We are so excited. We are flying into Raleigh and driving with Dad down to Shallotte to see Mimi and PopPop. Aunt JennJenn and Skye Skye will also be there for a few days. Dad and Jenn and Skye will all leave after the weekend. Alex and I will be at Mom's until August 7th and then back to Raleigh for 2 days before we head home.We will see Dad again the first wekend of August as he heads back to myrtle Beach. This is a much needed vacation for both Alex and I. Going to NC is always such a good break from medical stuff for both of us.
Please pray for safe travels.
Ali
Thursday, July 17, 2008
Sunday, July 13, 2008
Thursday, July 10, 2008
Okay, good and bad news! You should know by now we never get all good!
The good news is that Alex's swallow is fine. He is okay to keep drinking out of "big boy" cups and just taking small sips. So that was great news.
The bad news is that Alex is refluxing all the way up to his mouth. This puts Alex at major risk for aspiration. The radiologist is recommending that Alex have surgery to stop the reflux. This surgery has been brought up to us by Dr. Koenig, so it wasn't a huge shock, but we have been trying so hard to avoid anesthesia. I am waiting to hear from Dr. Koenig.
I'll update as I know more!
Ali
The good news is that Alex's swallow is fine. He is okay to keep drinking out of "big boy" cups and just taking small sips. So that was great news.
The bad news is that Alex is refluxing all the way up to his mouth. This puts Alex at major risk for aspiration. The radiologist is recommending that Alex have surgery to stop the reflux. This surgery has been brought up to us by Dr. Koenig, so it wasn't a huge shock, but we have been trying so hard to avoid anesthesia. I am waiting to hear from Dr. Koenig.
I'll update as I know more!
Ali
Lots of prayer requests today...
1. Taylor is doing well. They are getting discharged today. They will fly home tomorrow. Pray for safe travels for Mariah ad Taylor. Also, Brandon, Mariahs husband, is currently in California fighting the fires. Pray for his (and all the firefighters) safety.
2. Alex has his repeat swallow study today. I am not sure what it will show. Please just pray for ACCURATE results so I can put this behind me. Alex and I are very comfortable with Sara the ST who is doing the test. We know Sara from therapy and she has a therapy dog who happens to be a black lab like Hayley!
3. Most importantly...we just found out last night that one of my good friends has breast cancer. She has two young kids. She is seeing a surgeon today so they can set a surgery date and determine what stage it is. Please pray for their family as they struggle through this difficult time.
Still waiting on reports from Houston. I will update later about the swallow study.
Ali
1. Taylor is doing well. They are getting discharged today. They will fly home tomorrow. Pray for safe travels for Mariah ad Taylor. Also, Brandon, Mariahs husband, is currently in California fighting the fires. Pray for his (and all the firefighters) safety.
2. Alex has his repeat swallow study today. I am not sure what it will show. Please just pray for ACCURATE results so I can put this behind me. Alex and I are very comfortable with Sara the ST who is doing the test. We know Sara from therapy and she has a therapy dog who happens to be a black lab like Hayley!
3. Most importantly...we just found out last night that one of my good friends has breast cancer. She has two young kids. She is seeing a surgeon today so they can set a surgery date and determine what stage it is. Please pray for their family as they struggle through this difficult time.
Still waiting on reports from Houston. I will update later about the swallow study.
Ali
Tuesday, July 8, 2008
Just a quick update...
WE HAD A BLAST TODAY!!! Kass and her children Abby, Madi and Chance were so awesome. Alex can't stop talking about his "new friends". We are already making plans. Kass is wonderful for me because she has been doing this for longer and has been through so much she can help me with. We see so many similarities in our families and our children. We can't wait to get Bruce and Michael together.
Still no results! Hopefully today.
Please pray for Mariah and Taylor (her baby). Taylor has struggled since birth. She has had an ng tube (down the nose) for the last few months. She is having surgery today to place her gtube (feeding tube like Alex's). Taylor is only 4 months old and hasn;t been under anesthesia yet. Mariah is by herself as Brandon had to stay home to watch the twins.
Mariah- I love you. I wish I was there to hold your hand and help you through the next few days. I am there in spirit and only a phone call away.
Ali
WE HAD A BLAST TODAY!!! Kass and her children Abby, Madi and Chance were so awesome. Alex can't stop talking about his "new friends". We are already making plans. Kass is wonderful for me because she has been doing this for longer and has been through so much she can help me with. We see so many similarities in our families and our children. We can't wait to get Bruce and Michael together.
Still no results! Hopefully today.
Please pray for Mariah and Taylor (her baby). Taylor has struggled since birth. She has had an ng tube (down the nose) for the last few months. She is having surgery today to place her gtube (feeding tube like Alex's). Taylor is only 4 months old and hasn;t been under anesthesia yet. Mariah is by herself as Brandon had to stay home to watch the twins.
Mariah- I love you. I wish I was there to hold your hand and help you through the next few days. I am there in spirit and only a phone call away.
Ali
Friday, July 4, 2008
Happy 4th of July!!!
Things are starting to look up! We spoke to our breeder yesterday. We have always been really close to them. They have told us just to start the heartworm preventative again. They said a lot of times that will be enough. It will also give us time to save up money for if we do need to proceed with the treatment.
Alex is also feeling much better. Apparently I forgot to post this, but Alex did not do well with the second mito medication. He was feeling awful and his behavior matched. After 5 days, we pulled it with Dr. Koenig's blessing.
We are expecting some important test results on Monday. A blood test that we have been waiting about 6 weeks for. It will show whther they found the exact mutation causing Alex's mitochondrial disease. It will provide important information on what to expect with Alex as well as whether the defect is being passed down through me. Please pray for a mutation to have been found.
We received some test results back yesterday. Alex's bone age scan was normal. This is NOT good news. If it had been delayed by say a year, then Alex would continue to grow a year after his peers stopped. Because his is not delayed he will not grow more and will overall be smaller in adulthood. Something showed on his PH probe (reflux test) not sure what. We are supposed to be seeing GI in July to see if we should change anything. We are still waiting on endocrine and immune bloodwork.
We are repeating Alex's swallow study here on Thursday. We are using a speech therapist that we know from therapy. (They all love Alex so ALL the therapists know him) We know that this will be done accurately and let us know if there is concern for Alex's swallowing muscles. The fear is a risk of aspiration, which in a kid like Alex will lead to pneumonia and a severe illness or even death. This is really important for us to get a handle on NOW!
Tonight we are meeting our friends to go to a carnival and see the fireworks. We are really excited. It always brings a smile to my face to watch Alex interacting with his friends and enjoying just being a kid.
As many of you know, I am supported by a wonderful group of women that I have cultivated friendships with on the internet. They are all women who have children that are affected by the diseases that Alex suffers from. Although I have encountered some crazies over the years, I have also met many ladies I am proud to call my friends. For the most part we are all mothers who just desparately want the best for our children. I am proud to call these women my friends.
Alex and I are meeting one of these special ladies and her children for lunch on Monday. We are all really excited. She is right here (in Dallas). It is always good to have people close by! Kass- We can't wait.
We love you all. Thank you for being a part of our lives. For praying for us and thinking of us adn genuinely wanting the best in life for our family.
Ali
Things are starting to look up! We spoke to our breeder yesterday. We have always been really close to them. They have told us just to start the heartworm preventative again. They said a lot of times that will be enough. It will also give us time to save up money for if we do need to proceed with the treatment.
Alex is also feeling much better. Apparently I forgot to post this, but Alex did not do well with the second mito medication. He was feeling awful and his behavior matched. After 5 days, we pulled it with Dr. Koenig's blessing.
We are expecting some important test results on Monday. A blood test that we have been waiting about 6 weeks for. It will show whther they found the exact mutation causing Alex's mitochondrial disease. It will provide important information on what to expect with Alex as well as whether the defect is being passed down through me. Please pray for a mutation to have been found.
We received some test results back yesterday. Alex's bone age scan was normal. This is NOT good news. If it had been delayed by say a year, then Alex would continue to grow a year after his peers stopped. Because his is not delayed he will not grow more and will overall be smaller in adulthood. Something showed on his PH probe (reflux test) not sure what. We are supposed to be seeing GI in July to see if we should change anything. We are still waiting on endocrine and immune bloodwork.
We are repeating Alex's swallow study here on Thursday. We are using a speech therapist that we know from therapy. (They all love Alex so ALL the therapists know him) We know that this will be done accurately and let us know if there is concern for Alex's swallowing muscles. The fear is a risk of aspiration, which in a kid like Alex will lead to pneumonia and a severe illness or even death. This is really important for us to get a handle on NOW!
Tonight we are meeting our friends to go to a carnival and see the fireworks. We are really excited. It always brings a smile to my face to watch Alex interacting with his friends and enjoying just being a kid.
As many of you know, I am supported by a wonderful group of women that I have cultivated friendships with on the internet. They are all women who have children that are affected by the diseases that Alex suffers from. Although I have encountered some crazies over the years, I have also met many ladies I am proud to call my friends. For the most part we are all mothers who just desparately want the best for our children. I am proud to call these women my friends.
Alex and I are meeting one of these special ladies and her children for lunch on Monday. We are all really excited. She is right here (in Dallas). It is always good to have people close by! Kass- We can't wait.
We love you all. Thank you for being a part of our lives. For praying for us and thinking of us adn genuinely wanting the best in life for our family.
Ali
Tuesday, July 1, 2008
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