I realized today that it's been a really long time since I have updated all of you on Max. Simply put, he's doing great! Despite the temper tantrum and whiney phase we're going through right now, he's wonderful.
He's still on the verge of crawling. He gets up on all fours but that one stinking leg gets stuck under him in the transition process so he collapses on his belly. He will pull himself up with assistance from someone's hand on his knees and butt and he's still walking in his walker.
He learned another sign last night to bring us up to a total of four (want, more, drink and all done). He is starting to make the sounds of some words which is awesome! He will make sounds for on, off, in, out and hi. He has also added the letter B in his vocabulary.
We're definitely getting there.
So how is he doing medically? Fantastic. As you saw in a previous post, we are on once a month visits now to the dialysis clinic for labs. We go back on January 6th for our first visit since December 9th. It's a little nerve wracking on my end. I over analyze every whine and whimper. I am constantly over thinking things and blaming them on an elevated lab or maybe the newly found hernia on his belly is bothering him.
Oh the worries that a mother of a chronically ill child has. I need to learn to relax and just enjoy him for him rather than always thinking about whether the amount of juice he had today is raising his potassium. I guess it just comes with the territory.
We have had a couple of follow up appointments this month. We met with high risk clinic earlier in the month. This is when I mentioned the bulge that he has along one of the incisions on his belly. It is a hernia but they are not going to fix it at this time. We do have to watch it to make sure that it doesn’t get “hard.” If this is the case we have to rush him to the ER (this is why I am constantly wondering if his whining is the hernia). Other than that everything is going well. Dr. Cahill doesn’t want to see us again for 6 months.
We had a renal and bladder ultrasound that was done in record time. It usually takes an hour because Max doesn’t like to cooperate, but he did this time so it only took 20 minutes. Thank you Max!!! We had our urology follow up yesterday with Dr. Alam (this too was done in record time- we were in and out in about an hour). I was hoping to walk out feeling better about everything which I did, but I also walked out a little confused I guess. Dr. Alam is still thinking that transplant is happening in the spring whereas Dr. Brad and Dr. Ben are telling me summer. So I have no stinking clue what’s going on. I wish we would just set a date. I did find out that it’s looking like Dr. Sheldon will be back home in Cincinnati by February. So this means that if we do transplant in spring that Dr. Sheldon should at least be able to sit in on it. If Dr. Sheldon says that he will be operating by June then we will wait until then so that he can do the surgery (this is what Dr. Alam’s plan is anyway).
Dr. Alam seems to think that now that Max is bigger he doesn’t feel that he will have as much of an issue connecting the ureter to the bladder, nor will he have to take down the vesicostomy and redo it. All good news!
I asked Dr. Alam if Max was without a doubt going to need a bladder augment or if there was a chance that his bladder could have improved. His answer was that his bladder could improve! There is a chance that Max’s bladder could have gotten bigger and that the pressures could have gone down. IF this is the case, Max’s vesicostomy could be broken down so that he can pee on his own. This would also mean that we would have to catheterize him through his penis several times a day, but I will take it. Not that I want to do it, but the fact that Max would urinate on his own would be a miracle. IF Max’s pressure are borderline Dr. Alam said that Dr. Sheldon will make the final decision on what the next step would be for Max’s bladder.
We will be doing a VCUG and urodynamics in a few months to see what his bladder is looking like. Dr. Alam has also increased his Ditropan in hopes that it will help his bladder improve. Ditropan is a medication that reduces muscle spasms of the bladder and urinary tract.
So this is where all of you prayer warriors come in. I have been silently praying for this on my own thinking that it was an impossible prayer request. Now I am asking for all of you to pray for Max’s bladder. Please pray for it to have gotten bigger, for the pressures to have decreased and for the grade five reflux to have either decreased or gone away.
Dr. Alam told me to never give up hope but that all of this is a long shot. The things that we are hoping and praying for are obviously the best case scenario but it would be a miracle if they happen. Max needs another miracle, so I ask all of you to please pray. Please have everyone you know pray that Max’s bladder improves and that he doesn’t need a bladder augmentation.
Please pray for the best case scenario. Please pray for a miracle.
December 29, 2009
December 25, 2009
Merry Christmas
Merry Christmas Everyone! Hope its full of lots of love and laughter.
Love,
Tim, Beth and Max
Love,
Tim, Beth and Max
December 23, 2009
Project Santa was a Success!
We want to thank all of you who donated to Project Santa. It was so wonderful to see the excitement on the faces of the ladies from Children's. We knew right away that we had made a difference in the lives of these children.
Cathy and Maggie told us that Children's Hospital's budget for toys is very low because they focus on care and research. The hospital is only able to budget $1.00 per patient! You can't even buy a pack of gum for $1.00! They went on to say that they never run out of toys though because of people like you. So we thank all of you from the bottom of our hearts for helping us put a smile on these kids faces. Thank you for helping us make a difference. We wouldn't have been able to do it without your help.
It was so rewarding for Tim and I to be able to give back to the hospital that saved Max's life.
Merry Christmas everyone!
December 15, 2009
Project Santa
I wanted to take this time to thank all of you that have participated in Project Santa. Our spare bedroom looks like a toy store!!!
I have been in contact with the Donor Relations Officer at Children's and she wants to meet us personally. So we plan delivering the gifts on Monday, December 21st and meeting Ms. Cathy. This means that there is an extra few days if anyone would still like to donate. Please email me at mommy2max08@yahoo.com if you're interested.
We are so excited about delivering these toys! Tim is off that week so we plan on going over around noon for a social visit to the dialysis unit, dropping off the toys and then going for our surgery consult at 3pm- this is just a visit to prepare for the transplant- no new surprises :o)
Again, we thank you so much for joining us on this wonderful journey of putting a smile on these children's faces. It's such an honor to know that we were able to make this Christmas just a little more special for these kids. It gives me chills and puts tears in my eyes when I picture their smiling faces. So thank you. Thank you for making this possible.
I have been in contact with the Donor Relations Officer at Children's and she wants to meet us personally. So we plan delivering the gifts on Monday, December 21st and meeting Ms. Cathy. This means that there is an extra few days if anyone would still like to donate. Please email me at mommy2max08@yahoo.com if you're interested.
We are so excited about delivering these toys! Tim is off that week so we plan on going over around noon for a social visit to the dialysis unit, dropping off the toys and then going for our surgery consult at 3pm- this is just a visit to prepare for the transplant- no new surprises :o)
Again, we thank you so much for joining us on this wonderful journey of putting a smile on these children's faces. It's such an honor to know that we were able to make this Christmas just a little more special for these kids. It gives me chills and puts tears in my eyes when I picture their smiling faces. So thank you. Thank you for making this possible.
December 9, 2009
What do I want for Christmas?
I want Max to be in this picture in July of 2011.
Only God can create something as gorgous and this...
Dale Hollow Lake- July 2007
Let the good times roll.
sigh.
Only God can create something as gorgous and this...
Let the good times roll.
sigh.
Down to Only Once a Month
Well Max had his dialysis clinic appointment today. Both Dr. Ben and Dr. Brad are very happy with Max and how things are going. So happy that they told us that we didn't have to come back until next year. You heard that right, if Max's labs come back looking good today, then he will start going once a month rather than every two weeks. This is great news because it means that Max will only have to have blood work done monthly. It's not so great news because that means we only get out of the house monthly rather than every other week.
I have to admit that when Dr. Dixon said those words, my heart broke in two. I know it sounds silly to all of you who have never spent most of your free time at the hospital, but this means we don't get to see our other "family" as often. I got an email from Max's primary hemodialysis nurse Sara today. I cried as I read her kind words:
I miss the times we had to talk. I miss seeing you and Max. I miss playing with Max. Keri and I talk about how Max won't remember us.....a good thing for Max to not remember a lot of the things we had to do to him.
Max, Tim and I will never forget those that got us to where we are today. We have grown to love these fantastic people. All of Max's doctors and nurses mean a great deal to us and it hurts to not see them as often. Of course not seeing them means that Max is doing well which we are extremely happy about, but it still hurts.
I miss the laughs, the tears and the talks that I got to have with all of Max's nurses (RCNIC and Dialysis Unit) I miss the slow days when all of the nurses would sit in the middle of the room and talk. They all included me like I worked there with them. Of course for as often as I was there they should have put me on the payroll... I could've been filing paperwork or something :o) For those of you who are thinking that I should become a nurse, the answer is "no thank you!" I know who you are!!!
After reading Sara's email and getting a really good cry out of me, I feel a lot better. (Thanks Sara!) I am going to miss seeing everyone every other week, but I am so thankful that Max is doing as good as he is. We'll be stopping by on the 21st to give all of you your Christmas Cookies. Can't wait to see everyone!!!
I hope everyone is surviving this crazy weather. We were out of electric for about 3hours this afternoon. It's too bad that we don't know anyone that works for Duke Energy :o)
I also wanted to remind those of you that are interested that Project Santa presents are due next Monday the 14th!!! Thanks again to everyone who has donated!
Happy Hanukkah Dr. Ben, Dr. Marissa and Zachary!!!
I have to admit that when Dr. Dixon said those words, my heart broke in two. I know it sounds silly to all of you who have never spent most of your free time at the hospital, but this means we don't get to see our other "family" as often. I got an email from Max's primary hemodialysis nurse Sara today. I cried as I read her kind words:
I miss the times we had to talk. I miss seeing you and Max. I miss playing with Max. Keri and I talk about how Max won't remember us.....a good thing for Max to not remember a lot of the things we had to do to him.
Max, Tim and I will never forget those that got us to where we are today. We have grown to love these fantastic people. All of Max's doctors and nurses mean a great deal to us and it hurts to not see them as often. Of course not seeing them means that Max is doing well which we are extremely happy about, but it still hurts.
I miss the laughs, the tears and the talks that I got to have with all of Max's nurses (RCNIC and Dialysis Unit) I miss the slow days when all of the nurses would sit in the middle of the room and talk. They all included me like I worked there with them. Of course for as often as I was there they should have put me on the payroll... I could've been filing paperwork or something :o) For those of you who are thinking that I should become a nurse, the answer is "no thank you!" I know who you are!!!
After reading Sara's email and getting a really good cry out of me, I feel a lot better. (Thanks Sara!) I am going to miss seeing everyone every other week, but I am so thankful that Max is doing as good as he is. We'll be stopping by on the 21st to give all of you your Christmas Cookies. Can't wait to see everyone!!!
I hope everyone is surviving this crazy weather. We were out of electric for about 3hours this afternoon. It's too bad that we don't know anyone that works for Duke Energy :o)
I also wanted to remind those of you that are interested that Project Santa presents are due next Monday the 14th!!! Thanks again to everyone who has donated!
Happy Hanukkah Dr. Ben, Dr. Marissa and Zachary!!!
December 6, 2009
I laughed today.
I went to Ikea with my brother and sister-in-law and had fun this afternoon. I laughed today. I feel like days like today are far and in between. I am having a pretty hard time right now. I am finding it hard to smile. When it happens, it feels great, but I am sad this week. I did laugh today though.
I had one of my moments the other night while trying to fall asleep. I had my moment when all I could think about was the transplant and all of the risks for both Max and I. I had my moment when I thought about what if Max doesn't make it through this or the bladder augmentation. I hate when I have moments like this, but the reality of it is is that this is our reality. I would do absolutely anything for it not to be, but it is. I try to imagine my life with out him. I guess I do it to try to prepare myself for the possibility of loosing him. I try to prepare myself... but I can't. I can't imagine my life without him. I can't live without my son. He is my everything and loosing him would be loosing everything.
I find myself praying that I would wake up from this nightmare. I pray that Max's labs will come back showing that miraculously he is a healthy 19 month old. I pray that this will all just go away and we will be a "normal" family. I pray that Max will see me as his mommy instead of his nurse. I pray that my marriage will sustain this extremely hard journey. I pray that his bladder will miraculously heal itself so that he doesn't need a reconstruction.
My heart hurts. I shouldn't let this get to me, but it hurts that everyone around me is either expecting or has had a baby recently. Don't get me wrong... I am so grateful that these children are healthy. I wouldn't wish what we are going through on anyone. It just hurts because we would be expecting our second child if Max didn't need a new kidney. I guess you could say it's a pity party for myself. But why us? Why our son?
My heart hurts. I think about all of the things that we would be doing if Max was born healthy. The Christmas toys that he's getting this year would be totally different if he was healthy. We would be expecting baby #2. We would have our big family vacation scheduled for next summer. We would have the house baby proofed... the mattress in his crib lower than the infant level... we would be potty training... I would be working a part time job to help build up our savings for the new house. Instead we're sitting here looking at the 2010 calendar wondering which day will change our lives forever... which day will be the best or worst day of our lives. Which day in the summer of 2010 will be the day that we celebrate or dread every year for the years to come.
My heart hurts... but I laughed today.
I had one of my moments the other night while trying to fall asleep. I had my moment when all I could think about was the transplant and all of the risks for both Max and I. I had my moment when I thought about what if Max doesn't make it through this or the bladder augmentation. I hate when I have moments like this, but the reality of it is is that this is our reality. I would do absolutely anything for it not to be, but it is. I try to imagine my life with out him. I guess I do it to try to prepare myself for the possibility of loosing him. I try to prepare myself... but I can't. I can't imagine my life without him. I can't live without my son. He is my everything and loosing him would be loosing everything.
I find myself praying that I would wake up from this nightmare. I pray that Max's labs will come back showing that miraculously he is a healthy 19 month old. I pray that this will all just go away and we will be a "normal" family. I pray that Max will see me as his mommy instead of his nurse. I pray that my marriage will sustain this extremely hard journey. I pray that his bladder will miraculously heal itself so that he doesn't need a reconstruction.
My heart hurts. I shouldn't let this get to me, but it hurts that everyone around me is either expecting or has had a baby recently. Don't get me wrong... I am so grateful that these children are healthy. I wouldn't wish what we are going through on anyone. It just hurts because we would be expecting our second child if Max didn't need a new kidney. I guess you could say it's a pity party for myself. But why us? Why our son?
My heart hurts. I think about all of the things that we would be doing if Max was born healthy. The Christmas toys that he's getting this year would be totally different if he was healthy. We would be expecting baby #2. We would have our big family vacation scheduled for next summer. We would have the house baby proofed... the mattress in his crib lower than the infant level... we would be potty training... I would be working a part time job to help build up our savings for the new house. Instead we're sitting here looking at the 2010 calendar wondering which day will change our lives forever... which day will be the best or worst day of our lives. Which day in the summer of 2010 will be the day that we celebrate or dread every year for the years to come.
My heart hurts... but I laughed today.
December 4, 2009
Our Life in Pictures and a Video
Fantastic News
Max had a blood test done last week to make sure he didn't acquire any antibodies from the multiple blood transfusions that he has received. If he has acquired the antibodies this could potentially mean that he could not receive my kidney. I don't know a whole lot about it, but I know that they want him to be at 0%.
With that said, I received this email yesterday from Dr. Ben:
I have good news for you. Max's PRA is still 0% after his blood transfusions, which is perfect. You can still give him a kidney.
Ben
Thank you God!!!
With that said, I received this email yesterday from Dr. Ben:
I have good news for you. Max's PRA is still 0% after his blood transfusions, which is perfect. You can still give him a kidney.
Ben
Thank you God!!!
December 3, 2009
Tis the season to give thanks
I was going through some pictures and I came across the disc from Max's benefit. It still brings me to tears when I look at how many people came to celebrate Max's life. I look at these pictures and don't recognize more than half of our fantastic supporters. You amaze me every day for how much love and support you offer to our son. Our son who most of you have never met. Thank you from the bottom of our hearts.
I am so glad that I found these pictures. I was having a pretty rough day until I saw that I am not alone in this journey. Thank you!
I am so glad that I found these pictures. I was having a pretty rough day until I saw that I am not alone in this journey. Thank you!
December 1, 2009
Not Much to Report
Max is doing great!
We had a fantastic Thanksgiving!
My brother Tony got married on Black Friday!
The house is decorated for it's final Christmas with the Livingston family!
One of the two big projects that needs to be done before we put the house on the market has been started!
This is the month of follow up appointments, so we're busy, busy, busy!
Max is on a learning explosion! The kid is on fire!
Project Santa is still going strong! Thank you to those of you who have donated. We greatly appreciate your generosity.
I think that's it! I am all about short and sweet post that don't include any yucky news.
We hope everyone is having a great holiday season so far! I'll try to get some new pictures up soon.
We had a fantastic Thanksgiving!
My brother Tony got married on Black Friday!
The house is decorated for it's final Christmas with the Livingston family!
One of the two big projects that needs to be done before we put the house on the market has been started!
This is the month of follow up appointments, so we're busy, busy, busy!
Max is on a learning explosion! The kid is on fire!
Project Santa is still going strong! Thank you to those of you who have donated. We greatly appreciate your generosity.
I think that's it! I am all about short and sweet post that don't include any yucky news.
We hope everyone is having a great holiday season so far! I'll try to get some new pictures up soon.
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