Thankfully the last week has been hectic and fun. The crawfish boil on Saturday, family in from Chicago for the weekend, and the rodeo on Monday. I didn't fret about today's renal appointment at all.
And this morning was so crazy. I left the house with Jackson and Matthew an hour and 15 minutes before the appointment, thinking "no problem". I was so wrong. My first mistake is I didn't take the HOV lane (I lost my mind) and it took us all 1:15 to get to the hospital. Houstonians lose their minds in the rain. Then the sign said the garage was full, but the cop outside said it wasn't. After circling the garage, every floor twice, he was proven wrong. I went to valet, who said they were full. I think the poor parking attendant saw the freaked look on my face, and said he'd take care of us. Thank you sweet parking attendant!! We checked in for our appointment 14 minutes late. At 15 minutes, they automatically reschedule the appointment. Then we waited an hour to see the doctor. Whew!
With all of this, I had forgotten that there was anything to worry about until the nurse asked, 'are there any concerns?' I explained he had protein in his urine at his 1 year appointment, and she said "well, no concern now. Friday's urine was clear." Yippee. Our nephrologist came in and reviewed the other blood results, all which look good. The one concern is Matthew's continued high blood pressure. It's hard on his heart, can lead to and contribute to left ventricle hypertrophy (which he has), and is very hard on his kidney. His type of kidney (ectopic fused) is known to produce hormones that contribute to high blood pressure. Once our nephrologist reviews the most recent echo, he'll decide whether he believes Matthew should be on meds to control his blood pressure. If he decides against meds, we'll have to keep close watch on Matthew's blood pressure and then reassess at the next appointment (with a new nephrologist).
Sadly, our nephrologist is leaving TCH. It's a good move for him, but a sad move for us. He's been so supportive and caring since he first saw Matthew a year ago. He sees Matthew as a unique and interesting kid. He never dismisses something by saying "it could just be part of his syndrome." We will miss him.
After finishing up with renal, we had to RUN over to Dr. T's office which is at a different hospital. Matthew had his final head shots to compare to pre-surgery and then we met with Dr. T who was thrilled with Matthew's recovery and the shape of his head. No more head appointments for a year. Yipee!
Matthew and Jackson were tired from the rodeo last night, but they soldiered through the appointments well enough. Finally Matthew was done with appointments for the day and Jackson and I headed to lunch. At lunch, I looked down and Matthew was covered in poop. Fantastic. This just isn't our day. So I looked for a bathroom with a changing table. I assumed a CHILDREN'S hospital would have a bathroom with a changing table, but I was wrong. Ugh! But thankfully, after getting everyone all cleaned up and all that, the ride home was quiet and the rest of the afternoon was uneventful.
Tuesday, March 8, 2011
Monday, March 7, 2011
All 3 kids
Although I blog most often about Matthew, our life really revolves around all 3 of our kids. We are very lucky!
Alyssa is still loving preschool and is ready for kindergarten in the fall. She's learning to read, which thrills her to no end because she's been wanting to read on her own since she was 3. She's working on a group of books about two ducks named Goosie and Gertie. She's also learning to do single digit addition and we are often quizzed to make sure we know how to add (did you know 5+2, 6+1, 7+0, and 4+3 all equal 7?!?). She is quiet, but she hears EVERYTHING. We have learned we have to be careful what we say, as there is a chance it was caught and will be repeated when we least expect it. Alyssa is 5 going on 15 and loves to hang around her older cousins.
I probably can't say anything about Matthew that isn't documented on the blog already, but he's just got the calmest disposition. He loves to be around his 'peeps' and is thrilled beyond belief when you sing to him and clap. He loves to be held and loved on.
Alyssa is still loving preschool and is ready for kindergarten in the fall. She's learning to read, which thrills her to no end because she's been wanting to read on her own since she was 3. She's working on a group of books about two ducks named Goosie and Gertie. She's also learning to do single digit addition and we are often quizzed to make sure we know how to add (did you know 5+2, 6+1, 7+0, and 4+3 all equal 7?!?). She is quiet, but she hears EVERYTHING. We have learned we have to be careful what we say, as there is a chance it was caught and will be repeated when we least expect it. Alyssa is 5 going on 15 and loves to hang around her older cousins.
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Alyssa 5 going on 15 |
Jackson doesn't really like preschool, and when asked why, he'll respond "my friends bother me". Goodness. I suspect it might be because he has to sit down for prolonged periods of time. He loves to run. He'll often look to me before taking off in a sprint to say "I'm fast!" and just yesterday he told Aunt Carol "I wish I could fly." And though that makes it sound like he's adventurous, he's not a fan of bounce houses because "they are bumpy". He's so sweet and still loves to cuddle (when he's not running). Alyssa is his best friend.
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| Our Jack-in-the-box |
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Matthew with his Godmother (Aunt Carol) |
Sunday, March 6, 2011
Celebrating Matthew
This past week we've spent a lot of time celebrating Matthew's first year...that he made it, that we made it!
A week ago, on his actual birthday, we had planned a lunch at one of our favorite burger joints, then cupcakes at the house with us 5, my folks and Darren's folks and after that family photos with our fabulous photographer to mark this big day. The day did not go as planned. I should have known that would be the way we'd celebrate Matthew's birthday, because that is so very Matthew! My folks were sick, Darren's step-dad had to go on a business trip, and Matthew decided to take very late naps that interrupted the lunch and made him grumpy for the pictures. With all of that though, it was still a beautiful day! And even though he was a little grumpy for the photos, Brooke did an amazing job capturing the happiness of the day. More pictures from our happy day can be found on her blog. Thank you Brooke!
Yesterday was our annual crawfish boil. Our family and friends have been unbelievably supportive during this past year, and although we can never repay the kindness, we wanted to celebrate this past year with as many as could make it. The day started out sketchy, with wind and rain and cool temperatures. But a few minutes before the start of the boil, the sun came out and the weather was perfect! It was a fantastic time celebrating with old friends, new friends, some friends we haven't seen in years, and family that came all the way from Chicago! Besides being a good time, it is always interesting to look around and remember how this event has evolved, just as our life has. Years ago it was mostly adults and a few kids, now it's a kid party...lots of kids and lots of fun! Kind of like our life now! The perfect way to celebrate our sweet baby Matthew's first year!
A week ago, on his actual birthday, we had planned a lunch at one of our favorite burger joints, then cupcakes at the house with us 5, my folks and Darren's folks and after that family photos with our fabulous photographer to mark this big day. The day did not go as planned. I should have known that would be the way we'd celebrate Matthew's birthday, because that is so very Matthew! My folks were sick, Darren's step-dad had to go on a business trip, and Matthew decided to take very late naps that interrupted the lunch and made him grumpy for the pictures. With all of that though, it was still a beautiful day! And even though he was a little grumpy for the photos, Brooke did an amazing job capturing the happiness of the day. More pictures from our happy day can be found on her blog. Thank you Brooke!
Yesterday was our annual crawfish boil. Our family and friends have been unbelievably supportive during this past year, and although we can never repay the kindness, we wanted to celebrate this past year with as many as could make it. The day started out sketchy, with wind and rain and cool temperatures. But a few minutes before the start of the boil, the sun came out and the weather was perfect! It was a fantastic time celebrating with old friends, new friends, some friends we haven't seen in years, and family that came all the way from Chicago! Besides being a good time, it is always interesting to look around and remember how this event has evolved, just as our life has. Years ago it was mostly adults and a few kids, now it's a kid party...lots of kids and lots of fun! Kind of like our life now! The perfect way to celebrate our sweet baby Matthew's first year!
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| One of the indicators that the boil is now a kids party, shoes in front of the bounce house. |
Friday, March 4, 2011
RIP Uncle Mark
Every one should have a fun uncle when they are young. The uncle that tells jokes, does things that your parents wouldn't do, and plays with you on your level. Darren had his Uncle Bill. My kids have Uncle Bryan. And I had Uncle Mark. He would ride the roller coasters at 6 Flags with me when my parents wouldn't. He loved live music and drinking beer. He was quiet and sweet, but a fun loving guy.
My Uncle Mark has battled frontotemperal dementia for the past few years and, at 58 years young, lost his battle quietly on Wednesday night. He will be greatly missed by my Aunt Rene who lost her beloved husband, my cousin Alex who lost his dad, my grandmother who just lost her twin sister and now her baby boy, my granddad who lost his son, my dad and Aunt Ricki who lost their baby brother, my Aunt Sherri who lost her son's father, and me who lost my fun Uncle Mark. Though I'm sure they are dancing in Heaven welcoming Mark, we mourn here on earth. Please keep Mark's family in your thoughts and prayers.
Rest in peace Uncle Mark! We love you!
My Uncle Mark has battled frontotemperal dementia for the past few years and, at 58 years young, lost his battle quietly on Wednesday night. He will be greatly missed by my Aunt Rene who lost her beloved husband, my cousin Alex who lost his dad, my grandmother who just lost her twin sister and now her baby boy, my granddad who lost his son, my dad and Aunt Ricki who lost their baby brother, my Aunt Sherri who lost her son's father, and me who lost my fun Uncle Mark. Though I'm sure they are dancing in Heaven welcoming Mark, we mourn here on earth. Please keep Mark's family in your thoughts and prayers.
Rest in peace Uncle Mark! We love you!
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| Rene and Mark on their wedding day (2005) |
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| My Granddad, Dad, Uncle Mark, Aunt Ricki and Grandma Celebrating my grandparents' 50th wedding anniversary (~1991)  |
Thursday, March 3, 2011
Helmet Countdown Wk 8
Helmet Countdown- 8 weeks down, 0 weeks to go!!
Last night, Jackson and Alyssa celebrated Matthew's last night in the helmet by knocking on it for the last time. I'm so used to him in the helmet now, how it frames his chubby little cheeks, I think it will take a few days to get used to him without it.
But now he's done with the helmet! The exit scan was this afternoon. It almost didn't happen. Our orthopedist had an emergency but at the last minute he got us in for the scan. Matthew's head is totally in proportion. Yippee! No more helmet!!
Last night, Jackson and Alyssa celebrated Matthew's last night in the helmet by knocking on it for the last time. I'm so used to him in the helmet now, how it frames his chubby little cheeks, I think it will take a few days to get used to him without it.
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| Last night in the helmet |
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| Helmet Free! |
Wednesday, March 2, 2011
Run
I wish I was a runner. I'm really not, but I pretend to be every so often. Right now I'm doing the couch to 5k running program (again) with a group of women from my neighborhood. Maybe if I pretend I'm a runner, sooner or later I will be one. Fake it till I make it.
Anyway, I was out for a run/walk with Matthew earlier this week. As I walked, I looked down at Matthew and it struck me that we don't know if Matthew will ever be able to run. We have no idea if he'll ever walk. I know he's no where close right now. For a moment I was sad beyond belief, but just as the wind blew, I felt appreciation wash over me. I may not be a 'runner' but I can run and for that I should be thankful. And because I can run, I should with a joyful heart...for all the people who wish they could but can't.
Anyway, I was out for a run/walk with Matthew earlier this week. As I walked, I looked down at Matthew and it struck me that we don't know if Matthew will ever be able to run. We have no idea if he'll ever walk. I know he's no where close right now. For a moment I was sad beyond belief, but just as the wind blew, I felt appreciation wash over me. I may not be a 'runner' but I can run and for that I should be thankful. And because I can run, I should with a joyful heart...for all the people who wish they could but can't.
Tuesday, March 1, 2011
Pit in Stomach
I'm often asked how glad we are that all the big surgeries are behind us and if we can finally take a deep breath. My response is that I'm cautiously optimistic but think that it might be naive to believe we won't have any more surprises when it comes to Matthew.
I haven't had a pit in the bottom of my stomach in a while. It's been a few months since I've woken up in the middle of the night worrying about Matthew and his future. I realized that as I was walking with Matthew around the neighborhood yesterday. I then thought to myself that I should have waited to hear about the labs done at his 1 year checkup before I posted anything. Nah, I thought, everything will come back normal. Matthew has been doing so well!
When I got back from the walk, there was a message from the nurse asking for me to call her back. Thinking to myself-- Why don't they just leave a message to say all is okay? If it was something bad, Dr. W would have called. What could it be? I did this back and forth with myself for the 20 minutes I had to wait for the nurse to return my return phone call.
Matthew's CBC was normal, but he is leaking protein into his urine. The pit in the bottom of my stomach is back. Thankfully we have our 6 month follow up with renal next Tuesday (3/8) where the nephrologist will run further tests and help us to figure out what is going on. Matthew only has 1 kidney and we need to make sure it stays healthy and well. Protein in the urine can indicate a host of things ranging from minor to serious, all of which are not something you want when you only have 1 kidney. Our best hope is that it is nothing at all, a random event or false reading.
The roller coaster is tiring, we've been up for a while now and this curve took me off guard. We are fervently praying this result is an anomaly. Every one has been so supportive and cared and prayed for our sweet baby Matthew for this past year and given us so much, but please continue to keep sweet baby Matthew and his one kidney in your thoughts and prayers. We very much appreciate it and you!
I haven't had a pit in the bottom of my stomach in a while. It's been a few months since I've woken up in the middle of the night worrying about Matthew and his future. I realized that as I was walking with Matthew around the neighborhood yesterday. I then thought to myself that I should have waited to hear about the labs done at his 1 year checkup before I posted anything. Nah, I thought, everything will come back normal. Matthew has been doing so well!
When I got back from the walk, there was a message from the nurse asking for me to call her back. Thinking to myself-- Why don't they just leave a message to say all is okay? If it was something bad, Dr. W would have called. What could it be? I did this back and forth with myself for the 20 minutes I had to wait for the nurse to return my return phone call.
Matthew's CBC was normal, but he is leaking protein into his urine. The pit in the bottom of my stomach is back. Thankfully we have our 6 month follow up with renal next Tuesday (3/8) where the nephrologist will run further tests and help us to figure out what is going on. Matthew only has 1 kidney and we need to make sure it stays healthy and well. Protein in the urine can indicate a host of things ranging from minor to serious, all of which are not something you want when you only have 1 kidney. Our best hope is that it is nothing at all, a random event or false reading.
The roller coaster is tiring, we've been up for a while now and this curve took me off guard. We are fervently praying this result is an anomaly. Every one has been so supportive and cared and prayed for our sweet baby Matthew for this past year and given us so much, but please continue to keep sweet baby Matthew and his one kidney in your thoughts and prayers. We very much appreciate it and you!
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