|  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  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. 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! 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. 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
| DisclaimerI am not a medical professional,just a mom on a journey with this rare disease. Nothing on this site is intended as a substitute for a doctor's advice. Please note that our children have an extremely rare type of diabetes. If your child was diagnosed with diabetes in the first year of life or if there is a strong family history of Type 1 diabetes without Autoimmune markers,please visit the sites listed below to find out more information about being tested for Monogenic Diabetes. |
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.
