Saturday, December 26, 2015

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. 

Wednesday, December 16, 2015

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! 

Tuesday, December 8, 2015

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! 

Thursday, December 3, 2015

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 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! 

Saturday, November 28, 2015

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!


Thursday, November 19, 2015

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! 

Tuesday, November 10, 2015

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! 

Wednesday, November 4, 2015

Allergist Update

Shortly after I posted about Greyson's possible peanut allergy yesterday, I received a call from the allergist about his referral.  They had a couple openings THIS WEEK. So I scheduled the appointment for this morning at 10 o'clock. 

The appointment went smoothly and I really liked the doctor we saw. He took me (and my concerns) seriously. He explained that the way Greyson is reacting *sounds* like a peanut intolerance not allergy, but it is definitely possible he is allergic. He gave me an order for bloodwork and told me to continue avoiding peanuts until we get some answers.  The bloodwork will tell him if Greyson is allergic though it's negatives are not always correct.  We scheduled a skin test, and if the bloodwork is negative we will go forward with a skin test.

After we left we headed to our church for their Wednesday Noon Service.  We are not usually in town on Wednesdays so it was a blessing to be able to go. Also, Greyson makes some really cute faces when Daddy tickles him. 

After church, we headed to the labs for Greyson's bloodwork. Thankfully, the boys were very refreshed! While we were there, Nana took her lunch break so she could meet us there since she works at the hospital. It was a huge help having her there to watch the older boys (thank you, Nana!). Greyson did as well as expected with his bloodwork, though he only cried for a couple of seconds afterwards, opting instead to cuddle with the person who had just taken his blood. We will have results for this bloodwork in about a week.  Thank you guys for your prayers! 

Monday, November 2, 2015

Possible Peanut Allergy

Back in May or June, I was making baby food for Greyson.  I was stuffing it with calories to make him gain weight and  after we saw the GI, we started adding pediasure and PB2 (which is powdered peanut butter) for extra calories and protein.  Since we do not have a history of peanut allergies, I did not think twice about this.  

This same week, a stomach bug plagued the Corbitt's, going through each and every one of us. But then there was Greyson. It seemed odd that he was continuing to vomit when everyone else was well.  His nutritionist said it was probably the pediasure as some children cannot handle the calories. We stopped adding pediasure but he continued to vomit.  At this point, I knew that the only thing new in that food was the PB2. I was told not to jump to conclusions of an allergy but to hold off on peanut products for a little while until we could test it again.  I waited a few months and then gave him a simple breakfast of peanut butter toast.  After about two hours, he vomited again. After speaking with the pediatrician, we have decided to avoid all peanut products as a family until we can see the allergist and get more clear answers. We have the referral but we are waiting to hear about an appointment. So, at this time Greyson officially, unofficially is allergic to peanuts.

Friday, October 30, 2015

The Letter L

The second week of school was focused on the letter 'L'.  The boys had a blast making lavender L's and lemonade. As usual, we started the week off with dot-a-dot pages on Monday. We continued reading lessons with Teach Your Child to Read in 100 Easy lessons, and working on writing with Handwriting Without Tears (affiliated links below) throughout the week. 

On Tuesday, we made Lavender 'L's. I had Josh pick up some real Lavender at one of our favorite stores, The Paris Market, and the next day we stuffed fabric 'L's with it.  This was great motor skills practice and the boys loved playing with and smelling the lavender. 

On Thursday, we made lemonade.  I did most of the prep work earlier in the day, but left something for each boy to do.  They each juiced a lemon half, measured and poured simple syrup, and helped count the cups of water. And of course, they LOVED drinking it. 

Wednesday, October 28, 2015

The Letter F

The first week of school we studied the letter F.  The first few days were a little bit of trial and error to see what each boy could do but they both did great! Emory and Boaz both loved the Dot-A-Dot markers (affiliated links below)! I found several cool worksheets that use Dot-A-Dot markers and the boys have been going to town with them!  Boaz is learning to use a pencil to make intentional lines and scribbles and Em is using the Handwriting Without Tears worksheets to write his letters.

We kick off each week with some Dot-A-Dot letter sheets and Find a Letter sheets; then we do a craft and (sometimes) a snack that begins with that weeks letter.  This week we made foil fish and paper plate fish, though we did not do a snack. 

We fill in the rest of the time (that isn't at therapy or a doctor's appointment) with coloring sheets, math sheets, books, and learning to read with Teach Your Child to Read in 100 Easy Lessons.  
Both boys did really well in their first week of school and we couldn't be more proud of them! 


Monday, September 21, 2015

Greyson's Swallow Study


    This morning we woke up early and headed to Jacksonville for a Swallow Study for Greyson.  Well actually, we woke up late, but we made it there on time, by God's grace! 

     Greyson wasn't allowed to eat anything 6 hours before this study so we fed him in the wee hours of the night and then held and played with him while we waited for his Swallow Study. I went back with him fed him the sippy full of 'chalk tasting liquid' for the study.  They took X-ray pictures of his stomach and esophagus while he drank it and after it had time to leave his stomach.  After the study, we went to lunch and then headed to the Kid's Walk to kill some time before his GI and Nutrition appointment.  The boys loved the view of the trucks and had a blast playing up there. 

     At his GI/Nutrition appointment we discussed his diet and how to pack more calories in. The results from the Swallow Study were normal and so for now we are just going to continue his high calorie diet. We will see the GI in November again and if Greyson hasn't gained weight by that appointment then we will talk about the next steps for a G-Tube (tests and so forth). Please keep us all in your prayers!  At this point we just want Grey to gain weight and if he needs a g-tube to accomplish that, then that is what we will do but do pray that he will be able to put on weight on his own! 

Saturday, September 19, 2015

The Corbitt's Homeschool

    Two weeks ago we started preschool with Boaz and Emory.  So far each week we are studying a letter, working on writing, working on reading, and doing lots of playing!  I am going to be posting about what we study at the end of the week. We are just starting out so come check out the blog and learn along side us as we learn what it looks like to homeschool our two crazy sons, one with only 2 copies of the 21st chromosome and one with three.

Friday, July 17, 2015

Boaz Gets a Bike- Our Night at the Ambucs Fundraiser

    Last night we had the very special opportunity to attend the Ambucs Fundraiser.  Boaz was presented his special bike at this event and we all had a blast!  Ambucs 'is a non-profit service organization consisting of a diverse group of men and women who are dedicated to creating mobility and independence for people with disabilities.'  They provide AmTrykes to people who are unable to ride a traditional bike.  They do this through very generous people who provide funds to buy these bikes.  Last night we also had the opportunity to meet the man who fully funded Boaz's bike.  I can't even express how amazing that was!

    Boaz had that celebrity walk down by the time we left! He was even doing it down the halls of therapy this morning!  He was also on tv last night and this morning! We recorded it for the boys and, of course, they love to watch it.

    Emory is SO proud of his brother!

    Here is the link to watch him on the news!

Thursday, June 4, 2015

Greyson's GI Appointment

    If you haven't already noticed, Grey is super tiny. Up until recently he was still going up on the growth chart, he was just tiny. Lately though he has been a lot more active and plateaued on the growth chart.   We started feeding him more calories to make up for his activity, but our pediatrician agreed that it would be a good idea to see a GI and Nutritionist.  Off to Nemours we went. 

    The exam went really well and the doctor isn't concerned about an underlying problem just yet. He did run a bunch of blood work to check on Vitamins. He also talked about doing a swallow study and X-ray to make sure he is eating well, but Greyson doesn't have any symptoms so they would just be precautionary.  

    After the GI appointment and a short lunch, we met with the nutritionist.  She said the way we were feeding him was perfect.  She gave us some pedisure samples and a goal for his daily calorie intake.  I am supposed to send in his food logs each week.  If he is eating well and still not gaining weight then we will run more tests. For now, we are counting his calories and making sure he gets 750-800 a day. Greyson is blowing our mind with how well he is eating solid foods so this task has been surprisingly easy.  This kid loves to eat! 

    I will keep you guys updated on how he is doing!  The goal is that this will help him gain muscle as well so that he will be able to hold his head and sit in the near future! 

Friday, May 29, 2015

Happy Birthday Emory!

    Emory is 3 today! Happy Birthday little man! You are an awesome little and big brother.  And you are oh-so-stylish! 

Thursday, May 28, 2015

Its here! Its here! ITS. HERE.

    Yesterday we were able to go pick up Greyson's wheelchair/special stroller!  While we were in the waiting room, the man we were meeting for the fitting arrived with the wheelchair and walked right in front of us to go to the back. I told Grey that that was his wheelchair and he squealed and clapped (well, his version of clapping)!  Greyson is doing well in his new wheelchair and you can tell that he is overjoyed. 

    He was also very enthralled with checking out every little hing he could see and touch. 

    I, of course, could not resist personalizing it and adding Star Wars pads to the straps as soon as we got home. 

So thank you all for praying! 

Tuesday, May 19, 2015

Out Of Surgery

    Greyson is out of surgery and doing well.  He was grouchy at first but once he got to eat and they gave him warm blanket he cheered up.  He has been smiling at the nurses, playing with his maraca and trying to eat his IV.  Currently he is cuddling with daddy and falling asleep.   Thank you guys so much for praying!   

He Just Went Back...

    Greyson just went back for surgery.  They said it will be between 30 minutes and an hour and a half.  He will not be getting his lip tie clipped today.  Please keep him in your prayers! 

Monday, May 18, 2015

Prayers for a Minor Surgery

    Tomorrow Greyson will have a minor surgery along with getting his skin tag on his ear removed and hopefully a lip tie clip, though I am still waiting to hear about the lip tie clip.  We are not sharing what this surgery is for the sake of Greyson's privacy but we want you all to know what is going on so you can pray for us! So please keep us in your prayers tonight and tomorrow and I will be sure to keep you guys updated! 

Monday, May 4, 2015

Happy 1st Birthday to Greyson!

    One year.  It has already been one year. One year ago we met our second baby with 3 copies of the 21st chromosome. One year ago I was one day past my due date.  One year ago I got my VBAC. One year ago we started collecting Star Wars things for Greyson because he was born on May the Fourth. One year ago. 

    Greyson has been through a lot in his young life of one year.  But he is THE MOST joyful baby I have ever seen.   His smile is absolutely precious and will make anyone's day. He is thriving in his therapies and babbling constantly.  He is following his bothers around as best as he can with rolling. He is awaiting his wheelchair and stander so that he can join in more with his brothers. We can't wait to see what all Grey accomplishs in this next year. 

    Last weekend we celebrated his birthday with our families with a Star Wars themed party.  Greyson had a blast of course.  Today we celebrated with FroYo as is our birthday tradition and then we had cake at dinner.   Grey actually dug into his cake this time and loved being sung to! Happy Birthday, BB. 


Tuesday, April 14, 2015

A Wheelchair for Grey

Ok I know it has been FOREVER, but I do have a reason!  Back in January Josh accepted a job in Savannah and we moved back suddenly.  We are really loving it here and the kids are thriving being close to so much family.

    The boys are back in the swing of therapy and doing very well!   We love all of our new therapists and the boys are already learning more! Boaz has picked up a few new words and phrases and he really loves to help with everything. 

Emory is learning more than we can keep up with!   He is starting to write his letters and all he wants to do is learn! 

    Grey is doing GREAT.  Since we moved, he has learned how to pick up his head while on his belly.  He loves watching his brothers and trying to play with them. 

    He is using lots of cool equipment in therapy like a 'Crawler Helper' and Stander.  He needs support for his head while trying to crawl but he did move it forward a little bit! We are going to try to get a Stander at home for him.  He will be able to interact more in it and it will help his whole body develop. 

    He is also starting to eat more finger foods.  He REALLY loves strawberries. We struggled for a while with the fact that he couldn't join us while we would eat at restaurants but then I found a cart/highchair cover on Amazon that came with an infant insert! It works PERFECTLY.  He joined us for dinner for the first time at a restaurant a few days ago! 

    Because Greyson is so low-toned (lower than most babies with Down syndrome) we are going to get a him a wheelchair/special stroller.   This will provide the support he needs and allow him to interact with the world while we are out.  We are VERY excited about this.  When we went for his fitting and to see the demo, his face lit up when he realized he could see around him.  It was precious.  We are waiting on the excruciatingly long process of submitting it to insurance before we can get it!  It's torture!  

    We are hoping to get a Firefly PlayPak for him as well as this will help him sit up to play but insurance doesn't cover this so we are trying out different programs that may help.  Your prayers for this would be appreciated!  

Thank you guys for sticking through this whole long post! 


Thursday, January 8, 2015

Merry Christms and Happy New Year!


Boaz Woodie

Boaz is now three years old.  Can you believe that? He is working really hard in his therapies. Last year he was using a walker to get around and this year he is learning to climb stairs! He is also working really hard on talking. He can say a handful of words and can understand many more.

Boaz can also say and sign the answers to the first three questions of the First Catechism! 
1. Who made you? 
God made me.  
2. What else did God make?
God made all things
3. Why did God make you and all things?
For his glory. 

We are very proud of him!  

Emory Baxter

Emory is doing really well!  He is growing big and strong. He is really great with his brothers and loves to help take care of them. Emory knows most of the ABC's and can count to ten (with the exception of seven sometimes!). 

He can also answer the first five questions of the First Catechism! 
1. Who made you? God made me. 
2. What else did God make? God made all things. 
3. Why did God make you and all things? For His glory. 
4. How can you glorify God? By loving and obeying Him. 
5. Why are you to glorify God? Because He made me and takes care of me. 

Greyson Elliot 

Greyson Elliot Corbitt was born May 4, 2014.  He was born with Down syndrome and Bilateral Club Feet, though this was not a surprise to us. After he was born, he had fluid in his lungs so he was taken to the NICU. There he was diagnoised with Pulmonary Hypertension. He was put on oxygen to treat it. He spent a total of 33 days in the NICU. He was sent home with oxygen and continued to use oxygen for 2 months.

Once he was home, we started treating his Bilateral Club Feet. He had a short series of casts and then a small procedure to loosen his Achilles Tendon. He now wears a set of boots and bars while he sleeps at nighttime.

Grey is working hard in therapy. He is working really hard on stregthening his muscels and holding his head up.  He goes to physical therapy twice a week and occupational therapy twice a month (soon to be once a week). He will be starting speech therapy soon. He loves each of his therapists very much, as do we.  

Meet Nate

Nate is our new cat!  He is awesome with the boys! We really couldn't ask for a better cat. He knows how to be gentle with Greyson and can be rough with the boys when they want to play! 

Catechism is a classic form of teaching through question and answer. 

We hope you had a Merry Christmas and a Happy New Year! 

The Corbitts 

Photo credit: Stefani Ashley Photography