My 2 Sweet Babies

Kicking the Bottle – Cold Turkey

Christy Vacchio — Wed, 10 Aug 2011 20:23:25 +0000

Before anybody starts to judge my parenting skills, I just want to say that I often “know” what I’m supposed to do, but quite often follow the children’s lead and stick with some things way longer than is good for them. That being said, today is day one of kicking the bottle habit for Katie. I should have done this bottle weaning bit about a year ago, but due to moves and other excuses, I kept putting it off. She will be 2 years old next week and I keep holding out hope that I will get a job soon as a teacher. With those two bits of knowledge nibbling away at my brain, I finally decided it was time. I went through the same thing with Andy when he was around 2 years old, but don’t quite remember it being this hard.

I don’t actually remember the whole process with Andy. I just remember we threw all the bottles away one day and switched him to sippy cups. I’m sure he was just as mad about it as Katie is right now, but I guess time erases the screaming fits from your memory so you don’t remember the bad times quite as much. My concern with this whole transition of course has the added worry about blood sugars. As much as my logical part of the brain keeps telling me she’ll be fine, there is still the nagging “what if she has a low blood sugar?” part of my brain keeping me from throwing ALL of the bottles away. So 5 hours into the cold turkey day, I sit here blogging about it, with earphones in so I don’t have to listen to the blood curdling screaming because she is so mad that she can’t have a bottle for nap time. This too shall pass and she will eventually transition to the sippy cup when she figures out there is no other option. Oh, God give me grace to make it through the next few days.

Note: By the time I had finished writing this post, she had fallen asleep. All is quiet now in the house

Dexcom

Christy Vacchio — Sat, 02 Jul 2011 05:38:53 +0000

Well, today was the day! Andy got the Dexcom Granted, we are just doing a trial, but even in the few hours since we started, it’s really opened my eyes up to how crazy his blood sugars still are. The insertion wasn’t nearly as bad as I thought. I just stood him in between my legs and laid his torso over my left leg while the nurse inserted the sensor. He did cry a little, and clinch his butt cheeks, but in the end, I rubbed his back. The nurse started asking him questions like “What is your favorite activity?” To which he answered “Elevator”! Every time we go to Seattle Children’s Hospital, I am now required to park on a lower level so we can ride the elevator up to the clinic floor. The one time I did valet parking, he absolutely threw a fit when he got back in the car. How dare we not ride the elevator????

Anyway, I digress.

So he is now sleeping in bed with daddy and has his “Dexie” in the pocket of his cargo pajama bottoms. I have not heard any alarms, but it’s only day one. Tomorrow will be the real test as we begin the new ADHD medicine. We have decided to try Focalin as this has been successful in another child with the same mutation. We are starting low so we can increase slowly. I don’t really anticipate any drug interactions, but I am worried about the side effect of decreased appetite. That’s not a good side effect for a kid who is already a picky eater. Tonight at a blood sugar of 72, he did not want to eat the sandwich offered him. I thought I had done a pretty good job of hiding the carrots in between the pork (which he loves), and two pieces of WHITE bread, but he discovered them. I ended up folding the sandwich over on itself, smashing it as flat as I could get it, dipping it in ketchup and bribing him with Doritos to get him to eat! At least he was laughing through the whole thing so I just couldn’t get mad at him. We were all giggling by the end of dinner

Now to bed. I did give him a half dose before bed and I’m crossing my fingers that it’s not too much. I don’t usually check him anyway before dinner and always give him a full pill so I don’t anticipate too much trouble tonight. It will be interesting to see how he fares overnight as I haven’t checked him at night in over 3, maybe 4 years! Hoping for the best.

New Tests, New Diagnoses, New Pills

Christy Vacchio — Thu, 23 Jun 2011 13:37:47 +0000

It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long. Andy graduated from Kindergarten on Friday and the last day of school was Monday. We are trying to find a house to buy (if we get approved) while also looking for a place to rent just in case we can’t get everything closed by our lease end (hello, NOT paying $2200 a month to stay here!). Add to all of that a job search for summer and a teaching job hunt and I’m already exhausted.

Andy has once again added something to the mix of his symptoms for us to dig into. Back in February when he was having those bad lows, I started noticing some unusual behavior. He would just stop all of a sudden whatever he was doing, stare into space and his eyelids would flutter. This all would take place within about 5-10 seconds and then would be over as fast as it started. The first one happened when he was having a low so I thought it might just be a reaction to his low blood sugar. But when it continued to happen off and on at varying times, I started to get suspiscious. One day, I happened upon a documentary while channel surfing called “Autistic-Like” and many of the symptoms of this little boy were very similar to Andy. When they mentioned having an EEG and finding out that he was having Absence Seizures, the light bulb clicked over my head. As I listened to them describe what they saw as the EEG recorded the seizures, it sounded just like what I had been seeing in Andy. Since Epilepsy is part of the syndrome he has (DEND syndrome) it has always been in the back of my mind, but I always just equated epilepsy with the grand mal type of seizures that were very obvious. I had never heard of any other kind.

So I put on my research cap again and got down to finding out as much as I could about it. When he had his yearly check-up in April, I mentioned it to the pediatrician. She said it wasn’t an emergency, but that we should get it checked by the neurologist when we see him next. I’ve mentioned it to our Neonatal Diabetes support group and got a few other parents responding that they have seen and/or been diagnosed with varying types of seizures. So now, we are checking into it. The neurologist told us that we needed to do an EEG to get a better picture of exactly what type of seizure activity he could be having since the treatment for different types can actually make one worse if you get it wrong. So off to another test we go. We are scheduled for Monday right now, but it may change as I have to coordinate with dear hubby with his job. I also think he would be better as a support for Andy during the placing of the probes as he is much better at calming Andy down. I’ll update when I can.

We are also starting Andy on some medicine for ADHD tomorrow. After a year in Kindergarten and a discussion with the IEP team and all of Andy’s doctors, we have decided it is time to explore some medicine to help him calm down a little so he can focus. Of course, with Andy’s reaction in February to the amoxicillin, the endocrinologist is very cautious about trying any new meds. I’m a little scared too so we have decided to get him hooked up to a continuous glucose monitoring system (CGMS) for about a week. It’s a pretty small sensor, but we do have to go to the clinic for the nurse to insert it somewhere on his body. Andy hasn’t had anything permanently attached to his body since he was 21 months old so I’m curious as to how he will react. He’s now 20 pounds heavier and much more muscular so I hope it won’t be too much of a struggle. But it will give me peace of mind and that’s the most important thing.

With all of that going on, we are also finally starting some speech therapy for Katie. It’s actually a class we are attending for 8 weeks this summer so I’m hoping to learn a lot. Luckily, they were more than happy to have Andy join in and yesterday’s class seemed to go well. At least the kids group leaders didn’t have to come get me in the middle of class, so I’m thinking that’s a good sign! We are also attending a playgroup on Thursdays for toddlers. Katie has been going for 2 weeks now and is doing well and the great ladies at the hospital agreed that Andy could come in too. Today will be the first day for that. We’ll see how it goes. The main think I worry about is his size compared to the toddlers in the class. Hopefully he can behave and maybe even learn a few things about social interaction. Say a prayer for me to have patience.

Summer Has Begun!

Day #7 of D-Blog Week: What we’ve learned

Christy Vacchio — Mon, 16 May 2011 02:53:56 +0000

What we’ve learned – Sunday 5/15: Last year, Wendy of Candy Heartsmade a suggestion for this year. She commented “I think Day 7 should be a post about stuff we’ve learned from other blogs or the experience of coming together online…” Today, let’s do just that!! What have you learned from other blogs – either this week or since finding the D-OC? What has your experience of blogging the DBlog Week topics with other participants been like? What has finding the D-OC done for you? If you’d like, you can even look ahead and tell us what you think the future holds!

I think the first thing that jumped out at me is that there are SO MANY of you out here in the DOC. I knew of and followed many of the parent blogs, but had never really read a lot of the patient blogs or those with Type 2. I learned I am like many parents in nicknaming my kids and I have the same hopes and fears. I have learned that technology has come a long way since my son was on the insulin pump and there are even some patients out there who have new islets.

What I have learned most of all is that everyone in the DOC is welcoming and supportive. I see a community who learns together and bonds and connects so that we can all have a better life for ourselves and our children. While I don’t see a cure coming immediately (especially for my children’s rare genetic type), I don’t know their future because we are setting the precedent. I will stay an active part of the DOC as long as I can and hope upon hope that others can have a better treatment like the miracle we received or that we can see a cure soon.

Thank you Karen for connecting all of us this week and last year. I look forward to participating again in the coming years and following as many stories as I can.

Day #6 of D-Blog Week: Snapshots

Christy Vacchio — Sun, 15 May 2011 03:48:48 +0000

Saturday snapshots – Saturday 5/14:Today is the only day I’ve brought back a fun topic from last year. Inspired by the Diabetes 365 project, let’s snap a few more d-related pictures and share them again. Post as many or as few as you’d like. Be creative! Feel free to blog your thoughts on or explanations of your pictures. Or leave out the written words and let the pictures speak for themselves.

Since I’ve never shown many pictures of Andy as a baby, I thought I would take the opportunity to do this for today’s topic. I was recently working on Andy’s baby album and I’m always struck with very strong emotion when I see those pictures. He was so sick those last few weeks and we don’t have a lot of pictures. The ones we do are not a pretty sight. It just makes my heart hurt to think he was fighting for his life and not even the doctors recognized it until it was almost too late. So here is Andy’s story in pictures.

This picture was taken when Dan’s two sisters and niece came to visit us in Mississippi. They were with us for the weekend, but by Sunday afternoon, I knew something was very wrong with Andy. Notice how skinny he was. I tried to find the pictures taken in July when he looked so healthy but I haven’t loaded them to my computer yet. By my estimation, he had lost about 3 pounds. You can also notice how he couldn’t hold his head up (something he was able to do just days before).

About 3 Days before Andy was rushed to the ER, August 2005 ~ 18 weeks old

Andy was on MDI from August until April. We just were having too many extreme lows and highs and were struggling with measuring out 1/2 units of insulin that would bring him down 300-400 points. He started his pump the week before his 1st birthday. He was a much happier baby after that. His blood sugar wasn’t perfect, but the lows almost completely disappeared and the highs were more in the 200′s when he had them.

A much happier Andy with his insulin pump ~ 12 Months old, April or May 2006

After Andy’s DNA test came back in January 2007, we admitted him to the hospital to try the glyburide. It was more of a precaution just in case of emergency. I believe Andy was one of the first 5-10 patients to transition off of insulin in the US and the first in North Carolina. He was at Brenner’s Children’s Hospital for 5 days and by the 3rd day his insulin pump was totally disconnected. That was January 24, 2007, exactly 17 months after his first insulin shot. (BTW, that’s a diaper we wrapped around his hand so he wouldn’t play with his catheter. It’s the only thing that worked )

Andy in the hospital while he transitioned off of insulin and onto glyburide, January 2007, 21 months old

One thing we know about Andy is he is a ladies man. From the day he was born, he has always had a way of wrapping the nurses around his little finger. This was his favorite nurse when we were in the hospital that week. She fed him chips and chased him around the nurse’s station at night. Such a cutie!

Andy and his favorite nurse, Joyce at the hospital, January 2007

Day #5 of D-Blog Week: Awesomeness

Christy Vacchio — Sun, 15 May 2011 02:31:21 +0000

Awesome things – Friday 5/13:In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought us. What awesome thing have you (or your child) done BECAUSE of diabetes? After all, like my blog header says, life with diabetes isn’t all bad!

Where do I begin? I think the most awesome thing diabetes has brought to our lives is the extended “family”. Our family had the privilege of traveling to Chicago last summer where we got to meet many of the families who have experienced this little miracle of coming off of insulin. After several years of feeling alone, I was desperate for more answers and connections when I was pregnant with Katie. I had a sneaking suspicion we were traveling down the same road with her even before she was born, due to her dropping percentage of weight in-utero. So I became proactive and finally looked up the doctors in Chicago. I contacted them and they told me they had a registry for Neonatal Diabetes so they could connect the families as a support group. I missed out on the London conference in July of that year (because, HELLO, I was 9 months pregnant!) but I was able to connect and talk to many of the moms through e-mail and Facebook. When we finally met in Chicago, it was like attending a family reunion. Most of us already knew each other and our respective stories and those we didn’t know, we quickly became close friends. I hope we can repeat the experience some day in the future. We still keep in touch, some even by phone now (thanks Alissa and Angela ). We continue to add new families to our little group and I am happy to say that I am an international traveler now (well, by internet anyway, LOL). Hopefully in the future I can meet some more of my international friends in person.

Our family in Chicago, July 2010

Day #4 of D-Blog Week: Wild Card, Limerick Day

Christy Vacchio — Fri, 13 May 2011 02:39:33 +0000

Today’s topic for D-Blog week was 10 things I hate about Diabetes, but I’ve been trying to put myself in a more positive mood lately so I just didn’t want to get all bogged down in the negativity of doing a post like that. Instead I decided to do one of the wildcard topics. I thought I could do the “Step outside the box” topic easily, but I’ve been rolling over in my mind all day and kept coming up with zilch. Until, I went to the store and heard something on the radio. Today is “Limerick Day”. What fun!

* Step outside the box: Take your diabetes thoughts and instead of blogging about them as usual, push yourself to express them in a different way today. Make a vlog. Create a piece of D-Art. Write a poem. Draw a cartoon. Post a collage. Anything goes – as long as it is outside of your usual bloggy comfort zone!

Limerick Day is celebrated in honor of the birth of English writer Edward Lear, who is credited with making the limerick popular. A limerick, in case you aren’t aware, is a five-line poem in which the first, second, and fifth lines rhyme, and the third and fourth lines also rhyme.

While I have dabbled in poetry of a very private nature throughout my life, I tend to shy away from rhyming poetry so I thought this would be a good challenge. So I gave it a shot. Don’t laugh . . . Ok, go ahead, it’s pretty corny

God gave me a daughter and son

Diagnosed with diabetes under one

But lucky for them

New research was in

And they no longer take insulin*

*Side note, just in case you’re wondering, I pronounce this in-su-lun. Maybe it’s a southern thing!

Day #3 of D-Blog Week: Oops!

Christy Vacchio — Wed, 11 May 2011 16:07:41 +0000

Today’s topic is all about the bloopers we all tend to make every once in a while.

Diabetes bloopers – Wednesday 5/11:Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realize that things can (and will) go wrong. But sometimes the things that go wrong aren’t stressful – instead sometimes they are downright funny! Go ahead and share your Diabetes Blooper – your “I can’t believe I did that” moment – your big “D-oh” – and let’s all have a good laugh together!!

I don’t know how “funny” my story is but it was a BIG OOPS! At least it turned out ok in the end.

When Andy was on insulin and the pump, it would take us at least an hour to get out the door it seems. My husband and I missed the days of just jumping in the car and taking a long drive to anywhere and nowhere in particular. Pre-kids, we would drive all over. One time we drove all the way from Vancouver, WA to the Idaho border, stopping along the way at a winery and at one point stopping on the road for me to take some awesome pics of an old truck. Now, anyone who has babies knows you have to pack the diapers, wipes, bottles and/or sippy cups, formula, etc, etc before you go anywhere farther than the grocery store. With a diabetic baby, add to that, needles, insulin, extra pump supplies, test strips, juice, etc just in case. There is no freedom anymore. There are no spontaneous trips to anywhere.

Needless to say, once Andy transitioned off of insulin and started taking pills, we eventually got a little of that “freedom” back. We started with Sunday drives and eventually began taking longer and longer trips (Andy has always been a good traveler!). But one time, about a year after he started glyburide, we decided to take a spontaneous trip from our home in Greensboro, North Carolina to Savannah, Georgia. Dan was working there on a contract job and we wanted to check out the town as a possible permanent move. I thought I packed everything necessary for the trip in his diaper bag. But halfway through South Carolina, we stopped for something to eat and I discovered I had forgotten his bottle of pills! There was absolutely no way we could turn back to get them as we had already driven 4 hours. We knew we could probably make it at least a day without the pills because it is one of those drugs that “builds up” in your system so he wouldn’t go extremely high very fast. But we knew we couldn’t make it the whole weekend with him being ok.

Luckily, I remembered that since his prescription was at Wal-Mart, we could just call to find the closest one in Savannah to get them to fill it. I called from my cell phone and got the number and directions to the one closest to the Interstate. By the time we made it to Savannah, the prescription was ready. Crisis averted. You better believe I double check on longer trips now!

Day 2 of D-Blog Week: Letters

Christy Vacchio — Wed, 11 May 2011 02:25:08 +0000

Today’s topic is to write a letter:

Letter writing day – Tuesday 5/10: In February the Wego Blog Carnival asked participants to write letters to their condition. You can write a letter to diabetes if you’d like, but we can also take it one step further. How about writing a letter to a fictional (or not so fictional) endocrinologist telling the doctor what you love (or not) about them. How about a letter to a pretend (or again, not so pretend) meter or pump company telling them of the device of your dreams? Maybe you’d like to write a letter to your child with diabetes. Or a letter from your adult self to the d-child you were. Whomever you choose as a recipient, today is the day to tell them what you are feeling.

I thought all day about what I would want to write and who I might write to. I thought about writing a letter to Andy and Katie in the future, but with their certain type of diabetes, there are so many unknowns that I wouldn’t even begin to be able to conceive how to write that letter. Instead, I decided I would write a letter to myself at the time of my son’s diagnosis. If only I could have sent this letter to myself . . .

8-23-2005

Dear Christy,

You are a strong woman, but you are about to go through one of the hardest trials of your life so just take a breath and read. Your son is very sick. You have known this for weeks, months. You knew something wasn’t right when he was born and it’s been tough for these first few months, but it’s about to get even harder. You see, before your son was even conceived, something was amiss with the genes. As the doctors rush around and try to figure out what is wrong, you are going to be calm on the outside, but you will be screaming and crying on the inside, and that’s ok. They don’t know what’s wrong because the obvious is not so obvious due to his young age.

You see, the doctor is going to tell you that your son has Type 1 Diabetes. All of the doctors will be astounded because he is only 18 weeks old. He will be the youngest diabetes diagnosis they have seen at this hospital. It’s ok. He will be treated and he will live. You will have ups and downs. There will be good days and bad days. Stay strong. He needs you to love him. In about a year, you will learn that this is not really Type 1 Diabetes, but a different kind called Neonatal Diabetes. Do research. Find out all you can. Reach out to others. There will not be a lot of children like him because it is extremely rare. But the ones you find will become like an extended family. However, don’t forget about your own family in the process of reaching out to others.

You will have a daughter who will be born with the same gene mutation. She will be ok too. Just remember to love your children. Not because of the miracle of their uniqueness, but because they are lovely creations of GOD. God doesn’t make mistakes. It’s ok if you go through depression and ask God “Why Us?” It’s a normal part of the grieving process. Through all of this, you will become closer to God and you will grow into a person that you wouldn’t even recognize now. Other trials will come that will seem even harder than what you are going through right now.

Just remember that you are strong.

You can handle this.

You will fall apart.

You will cry.

But you will also laugh.

Diabetes Blog Week – Admiring Differences

Christy Vacchio — Tue, 10 May 2011 04:09:47 +0000

Thank you to Karen over at Bitter~Sweet for organizing this week of D-Blogging. For those of you reading this who are not diabetics or parents of diabetics, there is a whole community of diabetes bloggers out there and we tend to find each other because we can all understand and support each other. But today’s topic is about admiring those who are different from us. For me, that’s an easy one. Other than the new blogger, Melissa at My Corner, I haven’t found any other bloggers out there like me. If you know anything about our children, you know that their type of diabetes is extremely rare. The estimates are that it happens in about 1 in every 100,000-400,000 live births in the United States. Add into that the fact that having more than one child with it is only a mere 10% and we have the makings of a literal Neonatal Diabetes lottery.

So why do I stay so connected to the diabetes online community? Because I’ve been there. I’ve done the shots. I’ve done the insulin pump. I’ve held my child on my lap, upside-down, and inserted a cannula in his bottom (because that is the only place with enough fat on a 1 year old) while he is thrashing and screaming. I have seen the listless look when he, at only 6 months of age, dropped to a 26 blood sugar. I gave him a glucagon shot then for what I hope is the only time in his life. I gave multiple shots and got up at 2 or 3 in the morning to check his blood sugar. I’ve had the sleepless nights and the scary lows and the horrible highs where he just isn’t himself and he thrashes out. I have hoped and prayed for a cure for my son. And I, unlike all of my friends in the Type 1 Diabetes community, won the lottery. No, I didn’t get a cure. But I got a miracle nonetheless. I don’t have to check sugars 8-10 times a day (95% of the time). I don’t have to worry about lows as much (except for the two months this winter when amoxicillin wrecked havoc on both of them). I hardly EVER worry about highs anymore (about 99%) of the time.

So I admire all of my friends in the DOC (Diabetes Online Community) who have to deal with all of this and more. I still pray every day for a cure for my friends out there. I grieve with you all when I read the stories of hospital visits and deaths due to this monster. I admire you all for your optimism and your support of each other and I thank those of you who have welcomed me with open arms even though our worries are a little different. God bless you all and I pray for a wonderful night for everyone out there in blog land.