Our Scary Day at the Hospital

Our whole family passed around RSV this week.  We all got over it pretty quickly but any infection can be bad for a diabetic. Boaz was acting tired and had a low grade fever on Christmas Day. I decided he should go see the pediatrician in the morning so we can knock out whatever secondary infection he had gotten (I thought ear infection).  When we woke him up, we check his ketones with his blood ketone meter as per sick day intructions. The meter read 5.4 which is considered large. Ketones are produced when the body uses up fat for energy instead of carbs. They are common (but still dangerous) with high blood sugars but can come with low or high sugar when you are sick. The ketones are a byproduct of the body burning fat and can be toxic if too many get into the blood stream.  We have often flushed large ketones at home (as has many diabetic parents), but know to head to the hospital if he is lethargic or vomitting as these are signs of ketoacidosis (DKA). 

After fighting Boaz, to no avail, to look at his ears, his pediatrician sent us over to the hospital to get labs for infections and DKA.  At the lab, Boaz fought and thrashed and screamed just like he did at the pediatrician.  He totally broke our hearts because we could tell that though he was physically fighting us, there was no fight left inside him. He even whimpered when we check his sugar! 

We left the lab and were driving through Wendy's for lunch when the doctor called and told us we needed to head to the ER.  His bloodwork showed that he was in DKA and we were just a few numbers away from being admitted into the PICU!  We arrived at the ER and told them that we had a diabetic in DKA and we needed to go straight back (which our doctor had told us to say). We ended up waiting about ten minutes (a diabetic in DKA should NEVER have to wait!) and while we were waiting, he vomited- a major sign of DKA.  At that point I got up and went and told them AGAIN that he needs go to straight back. Thankfully, they took us back a few minutes later.  Once we got back, I took Emory and Greyson to the pediatric waiting room while Josh stayed with Boaz for the doctors to start an IV and do a chest X-ray.  The X-ray showed a spot that they thought was pneumonia but later determined it was just puffy from his RSV.  

After a few hours in the ER, we were told we would be admitted. Boaz had fallen asleep and they came in to check his vitals. He was SATing at 88 so we had to wake him up to see if that would bring the SATs up. We had a REALLY hard time waking him up.  It freaked us out!   The nurse wasn't concerned but we were! 

Somewhere between the time of being told we would get a room and actually GETTING a room, my parents came and picked up Greyson and Emory and then my sister and brother-in-law brought coffee and came to visit.  It is so nice having family nearby when we have to stay at the hospital! 

Shortly after they arrived, the nurse took us up to our room. Boaz was still out of it but he was slowly getting better. Before long, he was sitting up and had most of his color back.  His nurse brought in a few Christmas presents from the hospital and that perked him right up! We were all amazed to see him sitting up and playing!  

His next set of bloodwork came back better, which was a relief. We ordered him some dinner (more then I thought he would eat) and he scarfed it all down when it came! He hadn't eaten since that morning so we were happy to see an appetite again! 

At this point, he is eating and playing and watching tv. His ketones were up a little this morning (4.2) so I requested they run his bloodwork again. The talk is that he will be discharged today but we will see what the bloodwork says.   Thank you all for your prayers and visits! Please continue to pray and I will update you as we get more info. 

A Talker for Boaz

We (well actually I mean his awesome Speech Therapist) is working on getting Boaz a talker!   A talker is a device, much like a tablet, that Boaz will carry everywhere and be able to use to communicate what he wants and needs by pressing buttons on the talker.  The talker will say aloud what he pressed so it literally will be his voice.  He has been using this at therapy for a little while now and is doing well with it. We are so excited to get this awesome tool for him! Our aforementioned amazing therapist is filling out the billions of pages of paperwork and sending them into insurance so we should have it soon(ish)! Thanks Caitlin! 

No G-Tube for Grey (For Now)

    Yesterday we went to Jacksonville for Greyson's GI check up. Since he started moving around in February he has hardly gained more than a couple of ounces.   We weren't seeing any improvements with adding calories so we were moving towards a g-tube. At the last appointment we talked about adding more calories and seeing how he was in two months.  We were fully expecting to move forward with a g-tube but then he started to gain weight! The GI was happy with his weight gain (a full pound!) at the appointment yesterday and we decided to see how he was doing in another 3 months.  If he continues to gain weight, then we will just continue to monitor him, if he doesn't gain well we will do an endoscopy and consider a g-tube.   Overall, we are happy with those answers but please continue to pray that God will grow him! 

Book Review- Say Goodbye to Survival Mode by Crystal Paine

I first heard about Say Goodbye To Survival Mode by Crystal Paine on the Homemaking Foundations Podcast. Jami Balmet couldn't stop raving about this book and since I was already so encouraged by her podcast, I knew I had to read this book.  I am so glad I did.  I was in survival mode and I didn't even realize it. In the first part of the book, Crystal (from moneysavingmom.com) talks about routines and the value of them.  She says on page 33 that 'routines allow you to get your life in order so you can say goodbye to survival mode and start living your days with a purpose'. With this in mind, I was ready to start setting up routines (with the help of this book, of course!) and it's made a world of a difference in my life. Having a routine helped me realize how much time I actually have (and don't have, some days!) and has helped me enjoy my kids and focus on my business because I can slow down!

Something else of great value that she taught me was how to set goals.  Daily goals, weekly goals, lifetime goals. This has been very valuable to keep me focused! 

Crystal does a fantastic job of balancing biblical principals, her own story, practical tips, and answers to her reader's questions. This book is full of wisdom and sanity. Trust me, this book is for you no matter what stage of life you are in! 

I hope that you will pick this book up (affiliated link below) and start learning how to say goodbye to survival mode and start living your life! 

The Letter E

The next letter we did was 'E'.  This was an easy one because it's easy to think of things that start with 'E'.  This was a particularly busy week so we didn't do any crafts but we did do our usual dot-a-dot pages, Handwriting Without Tears, and How to Teach Your Child to Read in 100 Easy Lessons.  We also made deviled eggs.   These were a lot of fun but did not turn out edible; yet, the boys still ate them up!  Emory added way too much salt so Josh and I did not eat them! I didn't get any pictures this week because we were so busy!


  

Peanut Allergy Answers and Some More Tests

Good news!  Greyson DOES NOT have a peanut allergy!  His bloodwork and skin test were both negative so it is simply an intolerance.  Of course, we are still avoiding giving him peanut products because we don't him to throw up but it's not dangerous as an allergy would be. We are so glad to have answers about this and are praising God it is not an allergy! 

Also on Monday, I took Greyson to the Neurologist. I hadn't told anybody about this because I wanted to see how the appointment went first. For months (basically since Greyson was born) we have wondered if Greyson had Cerebal Palsey. When he was a baby he was so low toned that he felt as if he would slip right through your fingers. We only let a couple of people hold him besides us and when I did hold him I would usually wear him (if I was moving around anyways) because it kept him secure in the proper position and there was no risk of dropping him. His therapists agreed that he was more low toned than any other baby with Down syndrome they had worked with so we took him to the Neurologist in Jacksonville when he was a couple months old.  He agreed that CP was a possibility but the test required anesthesia and Greyson was so young and newly off of O2 so he wanted to wait.  He told us to bring him back in 6 or so months of he wasn't making strides in therapy. 

We moved to Savannah right around that mark so I just got him into a local neurologist.  I went in saying that I didn't want to leave without getting orders for a MRI to test for CP.  Several people (not doctors) have acted like I was crazy so I was half expecting this doctor to act the same way but she didn't at all! She agreed with my concerns and promptly ordered a MRI, a blood test for a muscle disease, and a DNA test to look for a depletion.  I do know what a depletion is, but I don't know exactly what she is looking for and why but I will let you guys know when I learn more.  

At this point, Greyson is receiving all the early intervention he would if he did have Cerebral Palsey so it is more for our piece of mind. We are nervous about the tests (just because who wouldn't be?!) but we are excited that the doctor took us seriously and is moving forward for answers.  

Feel free to ask me any questions you may have! 

Greyson is Sitting Up!

This week we are praising God for Grey's new found strength. After putting the kids to bed, Josh went back in to deliver drinks or something and discovered Greyson SITTING UP and he hasn't stopped since! All he wants to do is practice sitting up. He is even getting more brave and trying to pick up his hands!  We are so proud of him and we can't wait to see him grow stronger!