Tuesday, August 2, 2011
Happy Birthday, PK!
What a year! We continue to be amazed and humbled by what all God has done.
To catch you up medically, here is a recap of the latest updates ...
- Her kidneys are still healing, and as a result, her blood pressure is still elevated. She takes medication to control it and the doctor thinks this is a short-term (maybe another year) issue that will resolve as her kidneys grow.
- She has been discharged from the neurologist since six months. Her last EEG showed her brain function to be completely normal
- The developmental doctor and staff see her regularly. We had a new therapist at her last appointment who asked us if she had read the correct medical history. We were going to be discharged, but they want to see her walk and talk, so we go back next month!
Some things PK loves to do ...
- Say Bubba (Luke), Lar-La (Larry), daw-daw (dog dog), Mama, Dada ... she is going to be a talker. Wonder where she gets that?
- Eat anything carb related ... crackers, waffles, pancakes, cheerios, you name it.
- Climb anything! We cannot take our eyes off her for long.
- Make us laugh. She laughs, smiles, growls, dances, claps.
Thank you is inadequate. We are blessed beyond measure. Happy Birthday, precious miracle baby!
Sunday, February 6, 2011
We cannot believe it's been six months. We are still humbled every day. PK has been struggling this week with her first "typical" sickness - a bad cold and an ear infection. Last night James and I said how much harder even the little sicknesses are for children and parents who are still hooked up to machines at home. We reflected on the fact that we were very much prepared for her to need dialysis at home and how much more that would add to any sickness.
PK started blood pressure medication to combat her high blood pressure level, a side effect of kidney damage and the fact that her kidneys are still healing. We are praying that this is short term and her blood pressure issues resolve soon.
Thanks for checking in on us. Much love, The Larys
Friday, December 3, 2010
Christmas Time is Here!
We are constantly reminded by this sweet face that we received our own Christmas miracle!
James' last email (yes, one month ago! I am not a good blogger) is below. Merry Christmas!
It has been awhile so this one is long...
Two weeks ago our little girl turned 3 months old and she is doing great. Miraculous. Going back and reading my own updates from August and September, it is hard to believe how far we have come in such a short amount of time. It seemed like each day was an eternity with the proverbial fire hose of medical information showering us as we monitored various levels and our heart raced at each of her movements. The anticipation of reading the daily creatinine level with my heart beating out of my chest. The consistent support we received from each of our friends and family. The fervent and sincere prayers of so many, answered by a merciful God who we give all the glory to. So many times Sarah and I look at each other and just say how blessed we are.
Now, Sarah and I are forever changed parents, living a life of pseudo-normalcy with our healthy 3 month old daughter and our healthy 3 year old son. We refer to PK as our miracle child and often share her story. Everyone we come in contact with in from the medical and developmental fields are shocked at how wonderful she is doing. Sarah went and visited the Presby NICU the other day. They were so happy to see PK. The nurse manager was in tears and told Sarah that they didn't know if PK was going to make it, but because we were so positive, they were positive. Your support kept us positive. I am melodramatic and in the fraud investigations business so I often see things through negative eyes. But throughout all of this, I felt a peace like I had never felt before. I knew God would heal our baby.
Below is the latest, so some of this may be duplicate if you have received a couple of Sarah's updates.
Overall: PK is a super smiley baby who loves her daddy. She also loves to watch whatever Luke is doing whatever it is 3 year old boys do. Sarah loves the fact that when she asks PK, "Do you want to go Neiman Marcus?", she gets a big smile every time and I get heartburn. She is vocal, just like her father, mother, and brother (she never had a chance). She is in the 90th percentile in height and weight, and because of her constant need for milk, she doesn't sleep through the night yet, and I stress "yet".
Kidneys: As of my last update, the dialysis catheter has been removed and PK will forever be reminded of her start in life by the two scars to the right of her belly button. On August 19th, I added the prayer request that her creatinine level would drop to .4. At that time, her level was at 1.6 and had dropped from 5.3 and I even put the comment that a little higher would be fine as I knew it was a long shot. Well, her most recent blood test returned a creatinine level of .36. Yes!!! Within the range of a normal baby. Our nephrologist guesstimated that her kidney function was at around 70% and would continue improve. Score one more miracle for God.
Brain: In my last update the neurologist was pleased with her progress and we were going to stay on the seizure medication and have another EEG in 5-6 weeks. Well, 5-6 weeks past and the EEG came back completely normal with no signs of seizure activity. We are now in the last week of weaning her off the medication as people can experience some withdrawal if you cut off the medication cold turkey. The neurologist was very excited and said that we do not need to see him again. It is not everyday that these guys get to deliver good news like this. Also, a representative from early childhood intervention (ECI) came over and spent some time with Sarah and PK. Due to her traumatic start she had an automatic referral for ECI to track her progress. She told Sarah and we don't even qualify for a full analysis and that PK was hitting some 4 month milestones.
For anyone who ever questioned whether or not prayers get answered, I ask that you go back and read our story (http://porterkate.blogspot.com/). This was not a series of random acts or doctors and nurses doing their job (although they performed admirably). Ask anyone who was in the operating room at delivery or in the NICU those first 72 hours what they thought PK would be like at 3 months and her progress would not be on their radar. GOD DID THIS. Your prayers were answered.
I do apologize for the communication hiatus. I hadn't been this professionally unproductive since the Internet bust of 2001 so I needed to get back to work in October and November.
P.S. Through Sarah's work with Gail Davis (free plug - http://www.gdaspotlight.com/), she has become friends with a great man named Nando Parrado. Nando is most famous for climbing out of the Andes mountains after his rugby team's plane crashed. He wrote a book called "Miracle in the Andes " and in the 90s they made a movie out of his story called "Alive". Sarah saw him at an event a few weeks ago and was reminded that when the plane crashed, Nando had a massive head injury and the other survivors thought he was going to die, so they left him outside of the plane. Three days later, he was beginning to show signs of life and it's since been attributed to his being left outside in the freezing cold. Three days. The same amount of time PK was under induced hypothermia. Gave me chills when Sarah told me that.
Tuesday, September 21, 2010
Surgery was a success!
Yeah! No more tubes ... now we need to heal!
She was a trooper with the IV board on her arm.
Pooped and ready to get back home!
Let's get that tube out!
Hi everyone - we are about to pack up and head back to Medical City Children's to have PK's dialysis catheter removed! The surgery is at 1:30 pm today, so we'd really appreciate your prayers! See James' email update below. Much love, Sarah
----- Forwarded Message ----
From: James Lary
Sent: Thu, September 16, 2010 12:18:39 PM
Subject: [TNS@FBD] Porter Kate Lary - Update 9/15/10
Hello All,
PK continues to grow bigger and stronger with each day. I have attached a picture that Sarah took yesterday. She is so beautiful and we are so blessed with her progress (you can also see how long the catheter is).
Your prayers are needed once again as the surgery to remove the dialysis catheter is scheduled tomorrow, Friday at 1:30PM. Although, this is typically an outpatient surgery, because she is so young and small, she will have to spend the night at the hospital in the ICU once again. We are so happy to get the cetheter out, but it is still scary to have your 6 1/2 week old go under anesthetia for surgery. God's hands have been surrounded her this far and our prayer is that the surgery is a success.
We went to the neurologist this morning and he was pleased with her progress. She will stay on the seizure medication and do another EEG in 5-6 weeks. He wants her to continue to grow and gain weight before taking her off the medication. We are fine with prevention. We go to the nephrologist this afternoon, and anticipate a good report.
The Prayers:
1. Pray for the surgery on Friday. Pray that there are no complications and that her reovery is quick and smooth.
2. Pray for widsom and accuracy for the surgeon operating on such a small body
3. Pray that her kidney function stays the same or even improves
4. Pray that her potassium level stays at normal level.
5. Pray that the seizures continue to stay away and that we can be off the seizure medicine soon.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com/
----- Forwarded Message ----
From: James Lary
Sent: Thu, September 16, 2010 12:18:39 PM
Subject: [TNS@FBD] Porter Kate Lary - Update 9/15/10
Hello All,
PK continues to grow bigger and stronger with each day. I have attached a picture that Sarah took yesterday. She is so beautiful and we are so blessed with her progress (you can also see how long the catheter is).
Your prayers are needed once again as the surgery to remove the dialysis catheter is scheduled tomorrow, Friday at 1:30PM. Although, this is typically an outpatient surgery, because she is so young and small, she will have to spend the night at the hospital in the ICU once again. We are so happy to get the cetheter out, but it is still scary to have your 6 1/2 week old go under anesthetia for surgery. God's hands have been surrounded her this far and our prayer is that the surgery is a success.
We went to the neurologist this morning and he was pleased with her progress. She will stay on the seizure medication and do another EEG in 5-6 weeks. He wants her to continue to grow and gain weight before taking her off the medication. We are fine with prevention. We go to the nephrologist this afternoon, and anticipate a good report.
The Prayers:
1. Pray for the surgery on Friday. Pray that there are no complications and that her reovery is quick and smooth.
2. Pray for widsom and accuracy for the surgeon operating on such a small body
3. Pray that her kidney function stays the same or even improves
4. Pray that her potassium level stays at normal level.
5. Pray that the seizures continue to stay away and that we can be off the seizure medicine soon.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com/
6 weeks old!
Here's our long girl (already wearing 3-6 month clothes!) at 6 weeks old. Hopefully that catheter will be outta there soon!
5 week update
Although we're pretty sleep deprived around here, I can't seem to relax. Too much excitement that our family is all under one roof.
The little miss has been working her daddy pretty good. He can't seem to put her down and they are having a love-fest. Thankfully, James been on parental leave since we brought her home. The not so good news is that he
goes back to work on Monday. I think the kids and I are going to have some major withdrawal.
I wanted to share a couple of big moments from the last 24 hours:
1. Both kids are sound asleep in their own beds right now ... napping at the same time. We are truly enjoying the little things these days. I want to cuddle up next to both of them. I never thought I'd be so thankful to have kids in both beds. Before all this happened I took for granted that it would just be that way - thank you, Lord, for restoring that to us!
2. The best moment of the last 24 hours ... drum roll ... the nephrologist called and PK's levels have improved so much that we doing a consult with the surgeon on Monday to plan for removing the dialysis catheter! When the surgeon's scheduler called us back yesterday she said the doctor said, "She's already home?" Needless to say, miracles continue to abound.
James' email from earlier this week is below as well as a couple of specific prayer requests. Thank you again for your love and support. We continue to be amazed by the power of prayer and the gift of friendship. She's getting there and we know each of your prayers are a part of her recovery. - Sarah
p.s. I know you all love pictures ... good thing one of her grandmother's is a photographer. I have a feeling she'll be working her, too. ;-) Another one is attached.
From: James Lary
Sent: Mon, September 6, 2010 11:46:47 PM
Subject: [TNS@FBD] Re: Porter Kate Lary - Update Monday
Five weeks!! Five weeks? That is all? Before this, five weeks didn't seem like a long time. Now, five weeks feels like an eternity. It is funny how slowly time goes when you are taking everything one day at a time. Oh, and being home with your baby is a million times better than leaving her at the NICU each night.
Sarah posted a picture of PK on the blog (http://porterkate.blogspot.com) of what she looked like hypothermic and hooked up to the machines. An unbelievable site. We continued to be blessed by her progress. We didn't get a call on her labs last week, which is good, so the hope is that we won't get a call on her labs tomorrow. We see the nephrologist and do another EEG with the neurologist a week from Thursday. We pray that those two appointments go well.
At home we have been working on our schedule of bottle and breast feeds, while taking into account Luke's schedule and our sleep. We have been diligently tracking her input in milliliters via bottle or minutes nursing and tracking her output by continuing to weigh each diaper. Because of the kidney issues, we need to make sure her input is greater than her output. Sarah and her mother were laughing at me because I went to Kinkos and had a spiral bound booklet made of a spreadsheet I created to track all of our info. What can I say, I am a tad ocd.
Also, if you have not already done so, please remember to send a note to porterkatelary@yahoo.com with your location. If you missed this email because you thought it was duplicate, this was set up by friends of ours who thought it would be fun to get the numerous locations of the people who have been praying for Porter. We know that Porter would not be where she is today without the prayers of so many, and this is a fun to way see just how widespread the network of people is, who have been praying for Porter.
The Prayers:
1. Pray that her potassium level stays at normal level.
2. Pray that her kidneys continue to improve dropping the creatinine level
3. Pray that her input continues to be greater than her output, showing
4. Pray that dialysis is not needed and the dialysis catheter can be removed.
5. Pray that the seizures were an isolated incident and do not return.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com
The little miss has been working her daddy pretty good. He can't seem to put her down and they are having a love-fest. Thankfully, James been on parental leave since we brought her home. The not so good news is that he
goes back to work on Monday. I think the kids and I are going to have some major withdrawal.
I wanted to share a couple of big moments from the last 24 hours:
1. Both kids are sound asleep in their own beds right now ... napping at the same time. We are truly enjoying the little things these days. I want to cuddle up next to both of them. I never thought I'd be so thankful to have kids in both beds. Before all this happened I took for granted that it would just be that way - thank you, Lord, for restoring that to us!
2. The best moment of the last 24 hours ... drum roll ... the nephrologist called and PK's levels have improved so much that we doing a consult with the surgeon on Monday to plan for removing the dialysis catheter! When the surgeon's scheduler called us back yesterday she said the doctor said, "She's already home?" Needless to say, miracles continue to abound.
James' email from earlier this week is below as well as a couple of specific prayer requests. Thank you again for your love and support. We continue to be amazed by the power of prayer and the gift of friendship. She's getting there and we know each of your prayers are a part of her recovery. - Sarah
p.s. I know you all love pictures ... good thing one of her grandmother's is a photographer. I have a feeling she'll be working her, too. ;-) Another one is attached.
From: James Lary
Sent: Mon, September 6, 2010 11:46:47 PM
Subject: [TNS@FBD] Re: Porter Kate Lary - Update Monday
Five weeks!! Five weeks? That is all? Before this, five weeks didn't seem like a long time. Now, five weeks feels like an eternity. It is funny how slowly time goes when you are taking everything one day at a time. Oh, and being home with your baby is a million times better than leaving her at the NICU each night.
Sarah posted a picture of PK on the blog (http://porterkate.blogspot.com) of what she looked like hypothermic and hooked up to the machines. An unbelievable site. We continued to be blessed by her progress. We didn't get a call on her labs last week, which is good, so the hope is that we won't get a call on her labs tomorrow. We see the nephrologist and do another EEG with the neurologist a week from Thursday. We pray that those two appointments go well.
At home we have been working on our schedule of bottle and breast feeds, while taking into account Luke's schedule and our sleep. We have been diligently tracking her input in milliliters via bottle or minutes nursing and tracking her output by continuing to weigh each diaper. Because of the kidney issues, we need to make sure her input is greater than her output. Sarah and her mother were laughing at me because I went to Kinkos and had a spiral bound booklet made of a spreadsheet I created to track all of our info. What can I say, I am a tad ocd.
Also, if you have not already done so, please remember to send a note to porterkatelary@yahoo.com with your location. If you missed this email because you thought it was duplicate, this was set up by friends of ours who thought it would be fun to get the numerous locations of the people who have been praying for Porter. We know that Porter would not be where she is today without the prayers of so many, and this is a fun to way see just how widespread the network of people is, who have been praying for Porter.
The Prayers:
1. Pray that her potassium level stays at normal level.
2. Pray that her kidneys continue to improve dropping the creatinine level
3. Pray that her input continues to be greater than her output, showing
4. Pray that dialysis is not needed and the dialysis catheter can be removed.
5. Pray that the seizures were an isolated incident and do not return.
6. Pray that Porter has the strength and determination only God can give to keep improving.
God Bless,
James
http://porterkate.blogspot.com
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