A note from Rebekah: My mom wrote this for Ricky and gave it to him on Saturday for his sixteenth birthday. Every year, I blog about the day Ricky was born and the weeks and years that followed. This year I want to share what my mom wrote. She says it all so well!
Here are some things I remember:
Your mom was taking good care of you even before you were born. We had Thanksgiving, and soon after that she noticed that you were having trouble – not moving as much as you had been. Thank goodness she called the doctor so they could start taking special care of you and of her.
I remember the first time I ever saw you. Pop and I, Grandma and Grampa Senn, and lots of other people were looking through a little window at a tiny baby with a very fat tummy, hooked up to lots of tubes and wires, wondering if we’d ever get to see you grow up. I’m so glad we have!
You were in the hospital in the Neo Natal Intensive Care unit for about two months right after you were born. You slept in a special little bed, hooked up to lots of tubes and wires – it was pretty scary.
After a while, we were allowed to hold you, being careful of all your connections. I was too afraid I’d do something wrong, so I don’t think I ever held you in the hospital, but I did love to touch you and just watch you. While you were in the hospital, Pop went to see you every single day. He’d stop there on his way to work and take your picture and cuddle you. Then he’d take the pictures to work and show them to all his friends and his customers, so lots of people knew all about you! He loved you so much and was so proud of you.
One day while you were still in the hospital, your mom and I went shopping. As we were parking, she saw a lady get into the car with her baby, but instead of putting the baby in a carseat, the lady held the baby in her lap and they drove away. I thought your mom was going to jump in front of the car and strangle that lady – how dare she take chances with her baby, when our baby was so sick? Didn’t the lady appreciate what a treasure she had?
The first time I ever got you to myself, your mom and dad and Pop went to a CFRI meeting and I got to babysit at your apartment. I’d promised myself the whole time you were i he hospital that someday I’d get to just sit and hold you. And that’s what I did. I think they were gone for about 3 hours, and I just sat on the couch and held you and touched you and loved you and looked at you. It was wonderful!!
Since you’d been so sick and had such a hard time digesting your food, Mommy wasn’t able to nurse you. Instead, she pumped out her milk and donated it to other little babies who couldn’t drink formula. She gave GALLONS! Your dad called her the “Dairy Queen”. You, meanwhile, had to have this really smelly special formula. We had to open up an enzyme capsule, dump it into your mouth, then give you your bottle and hope you’d stay awake long enough to drink it. I must admit, lots of times I’d promise to buy you a pony if you’d drink the whole bottle. I think I owe you a few ponies.
For a long time after you came home, you had to wear a monitor and we had to have oxygen available just in case you needed it. It was quite a production taking you anywhere, but it was worth it! Sometimes I think about that when I see you with your DS carrying case – you’re still attached to electronics!
One of the funnest things to do with you when you were little was to show you the white nose-and-mouth mask that’s hanging by my front door. You really liked it, and you’d do your funny happy thing – making a little circle with your mouth and making your arms go in and out.
Whenever you came to visit, Pop could hardly let you go. He wasn’t very good at sharing you! And when you left, you always wanted to have “datchers” - that was your word for crackers. You’d look for something in the treat drawer, and we’d have to put some in a baggie for you to take along.
After you got a little bigger, you and Mommy would go to Pop’s work. You loved to get onto the creeper and roll under the cars with him to help. He’d let you use his tools to “work” on the cars. You were so proud of yourself, and Pop was so proud of you! Nobody who came in to the shop when you were there could get away without Pop taking you up and introducing you. Then you and Mommy and Pop would walk down to the Juicy Burger and have lunch.
Ever since that first day, your mom has been a tiger when it came to taking care of you and getting you the things you needed. When we found out you had CF, she learned all about it and insisted that all the doctors talk with her and gave her lots of information. I remember her trying to get Dr. McCracken to have a meeting with her. I think the doctor thought she was just a worried mom, but after she finally met Becky she understood how smart Becky was, how much she knew, and how dedicated she was to you. Whenever your mom has heard about anything that might help you, she’d do her research and see to it that you had the very best care.
I love you so much, Ricky. I am so proud of you, and so glad to be able to see you grow up into such a great young man. I wish Pop could be here to know you now. He’d be proud of you, too, and you guys would have such a good time together!
Sunday, November 27, 2011
Saturday, November 26, 2011
Sixteen years ago...
Sixteen years ago right now I was lying in an uncomfortable hospital bed, scared and exhausted, having sporadic contractions. Eight hours later Ricky was delivered by emergency c-section. 9:26 a.m. on Sunday, November 26, 1995. 33 weeks' gestation. That's when this incredible journey began. I'm so challenged and so lucky and my life has been changed in ways I never could have imagined!
Friday, November 18, 2011
Hypoglycemia and other stuff
I called the nutritionist today to ask what was up. Basically, Ricky's glucose test last week showed that he has reactive hypoglycemia. Basically his CF affected pancreas sends out the insulin late, causing a late precipitous drop in blood sugar (in this case 2 hours after he drank the stuff). His blood sugar during the test spiked like it was supposed to, to 220, but then at the 2 hour mark the insulin hit and it dipped to 50. (That's when he passed out in the parking lot!) It took him the rest of the day to recover.
What does this mean? Basically he needs to be careful to eat three moderate meals per day and snack in between, and not eat a huge amount of carbs at any time. Carb overload followed by reactive hypoglycemia may be what has caused his dizzy/sleepy spells (with irritability) over the past few years. We just finally happened to catch it in a test.
I asked if this meant he will develop CF related diabetes. I was told there's a 50% possibility of this anyway, but he could go on for years this way before developing full blown CFRD. So he'll just keep having the annual testing (oh, joy).
It feels good to at least have some answers.
Going home now... Ricky's bone scan went fine and so did his PFTs. He brought his FEV1 up 10% to 81% in the brief time since his CF clinic visit. Go Ricky!
What does this mean? Basically he needs to be careful to eat three moderate meals per day and snack in between, and not eat a huge amount of carbs at any time. Carb overload followed by reactive hypoglycemia may be what has caused his dizzy/sleepy spells (with irritability) over the past few years. We just finally happened to catch it in a test.
I asked if this meant he will develop CF related diabetes. I was told there's a 50% possibility of this anyway, but he could go on for years this way before developing full blown CFRD. So he'll just keep having the annual testing (oh, joy).
It feels good to at least have some answers.
Going home now... Ricky's bone scan went fine and so did his PFTs. He brought his FEV1 up 10% to 81% in the brief time since his CF clinic visit. Go Ricky!
Thursday, November 17, 2011
Update
Ricky had a rather traumatic blood test last week. This included his annual labs followed by a 3 hour blood glucose tolerance test. That test involves blood being drawn periodically throughout the 3 hour wait after taking a big drink of disgusting glucose solution. A lot of pregnant women have had this test in 1 or 3 hour varieties.
Poor Ricky started to feel badly right before the half hour draw. He was fasting, so I don't know whether he was just hungry or what. We had to battle him for 10 minutes to get the 3rd draw, making it late. He was tired and hungry and physically fought. The fourth draw went off without a hitch. After the fifth and final one, he was dizzy and unsteady, stumbling around, and on the way out to the car he passed out cold on the pavement. It was scary. And the CF nurse, when I called her, said she hadn't heard of that sort of reaction before. She suggested he might be dehydrated and I did let him rest and give him fluids.
After waiting a few days this week for all of the blood test results to come back, this afternoon I heard back from the CF clinic. Sort of. Ricky's labs are all back, but the nurse is going to talk to the nutritionist about the vitamin levels and glucose tests before they get back to me. That doesn't sound good, does it? (The glucose part; we've had to add extra vitamins before -- that's no big deal.)
Also heard back from the gastroenterologist's office today. Ricky is supposed to have an abdominal ultrasound to rule out other stuff given his frequent abdominal pain. But CCS and Medi-Cal will not cover the GI doc anymore, for bizarre reasons known only to them. So the GI doc is going to call the pulmonologist to strategize. Ricky will probably end up being referred to a GI doc who's also at Stanford and getting that test. It's kinda sad, since the original GI doc has seen him ever since he was diagnosed at 3 weeks old. But we will deal.
Tomorrow (Friday) Ricky's having his annual bone density scan and full pulmonary function test. And we will hear back about the blood tests. What a week it has been!
Poor Ricky started to feel badly right before the half hour draw. He was fasting, so I don't know whether he was just hungry or what. We had to battle him for 10 minutes to get the 3rd draw, making it late. He was tired and hungry and physically fought. The fourth draw went off without a hitch. After the fifth and final one, he was dizzy and unsteady, stumbling around, and on the way out to the car he passed out cold on the pavement. It was scary. And the CF nurse, when I called her, said she hadn't heard of that sort of reaction before. She suggested he might be dehydrated and I did let him rest and give him fluids.
After waiting a few days this week for all of the blood test results to come back, this afternoon I heard back from the CF clinic. Sort of. Ricky's labs are all back, but the nurse is going to talk to the nutritionist about the vitamin levels and glucose tests before they get back to me. That doesn't sound good, does it? (The glucose part; we've had to add extra vitamins before -- that's no big deal.)
Also heard back from the gastroenterologist's office today. Ricky is supposed to have an abdominal ultrasound to rule out other stuff given his frequent abdominal pain. But CCS and Medi-Cal will not cover the GI doc anymore, for bizarre reasons known only to them. So the GI doc is going to call the pulmonologist to strategize. Ricky will probably end up being referred to a GI doc who's also at Stanford and getting that test. It's kinda sad, since the original GI doc has seen him ever since he was diagnosed at 3 weeks old. But we will deal.
Tomorrow (Friday) Ricky's having his annual bone density scan and full pulmonary function test. And we will hear back about the blood tests. What a week it has been!
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