One year next week.

This day next week, May 24th, has been creeping up on me slowly but surely. It is our official day 1 anniversary with Type 1 Diabetes trying to run our lives. First “diaversary”. I hate that word, but I love it, too..Little Eli has not only survived but slaughtered year 1. Some days it wins. Especially lately, as I am reliving the weeks before diagnosis when I KNEW something was off, but I wasn’t sure what. The days we saw our sweet little 2 year old’s body fighting to keep this monster at bay. The late nights, the early mornings, so many times Matt and I have looked at each other and said, “What do we do next?” Living as a 24 hour mom, nurse, doctor, teacher...forever...There is no guidebook to my son’s needs.  It’s all one big science experiment, although an art more than a science most days. Sometimes the thought that this will be with Eli for the rest of his life is overwhelming...some days, I just want to say, “God, We are tired already. Please make this stop.” We have already spent 67 days in the NICU between 2 kids, 2 EEGs (always fun), tonsillectomies, broken bones, MRIs, skull fractures (don’t ask of you don’t remember 🙄)...cut us a break here. My oldest is 6.
The struggle is real. However, I have focused on that enough for the moment. For now I want to share what I have GAINED from this year, and how God’s faithfulness has shown me time and time again that He is holding our hands as we navigate this journey. I have always trusted that God has a plan for my life, even in the days I tried to fight it off. I have seen it, felt it over and over through the good times and the bad. However, I have never experienced so many obvious moments where He has sent people into our lives this year when I have been discouraged, exhausted, and clinging to my faith, all related to sweet little Eli.
Prior to Eli’s diagnosis, my parents had a family friend who has been T1 since childhood. I think more than anything, she was an immediate comfort to my parents, whose youngest grandson was now diagnosed. I know my parents have gained strength from her at a time where I was not giving it myself. My parents have done the classes, they are becoming more comfortable with the “art” of diabetes. They are all in.
However, you get back to daily life. Since I homeschool, and little guy was only 2 at diagnosis, our care needs away from me were slim...however, initially, our biggest concern was Sunday school. I have gone to the same church since late high school/early college. We had always loved them. They did my sweet little 29 weeker beautifully, They dealt with Kaycie’s needs amazingly. However, 6 weeks after diagnosis I pretty much hadn’t left home. I felt paralyzed, overwhelmed. I decided to email our church to put a plan in place before returning. They always gave goldfish or Cheerios during class, and both of those are huge blood sugar skyrocketers for Eli. While waiting to hear back from them, Matt and I discussed trying a church 5 minutes from home (we were driving 40 minutes each way before). Before we even visited, I emailed the children’s director and explained Eli (and Kaycie for that matter). They immediately responded back to me that the teacher in the room he would be in is a public school teacher who works with the T1 kids in her building! We felt so blessed and that this was the right move for us to try. She called me, we sorted out care, she comforted me...all for an hour a week.  Bonus points that the children’s director is hard of hearing and wears hearing aids like Kaycie, so she has been a blessing to her as well.  We visited the church that weekend, and the pastor is phenomenal. He even called me that night to welcome us, and I think I ran on like a freight train explaining it all to him 🤷‍♀️ He laughed and let me know to let him know personally if there was anything more they could do. In the meantime, never heard back from our old church. For weeks. When I finally got a phone call, and we discussed the issues, I was told that they would “try” to distract him during snack time, but they didn’t allow alternate snacks. So pretty much my 2 year old would be watching everyone else eat while he “gets” to color again and watch everyone else snack. I told them thank you, and we haven’t been back. God led us to this church, through Eli’s diagnosis...I’m not sure we would have made the leap otherwise, but it has been amazing! God KNEW I needed to trust. He led us right into the hands of an experienced T1 teacher...already in Eli’s room. That’s not chance! Things still get better though!
So my next highlight of each week (for me) pre-diagnosis was Community Bible Study. We met every Wednesday for 2 hours, and I got to meet with my group, while the kids had their own awesome lessons. It was “my” 2 hours each week, but my kids loved it and learned so much. It was my cup filling time. Eli was diagnosed right after it ended for the year, but it was such a sweet little community of women that I really learned to lean on. So much laughter and so many tears. I’m a crier, I admit. I was so bummed I had to miss the last meeting of the year last year on May 3 because Eli woke up with a 105 degree fever. They believe it was the fever that triggered his immune system into the T1 diagnosis (if that makes no sense, T1 is autoimmune and typically has a trigger to set it off). Anyway, we were all set to start again in the fall. But again...snacks...time. I had no idea what I was doing in those early days still. I felt like we may be a burden to the community. On a whim, I emailed the director and children’s director about Eli. I already had it in my head that this was going to get complicated, so we may just have to bow out. That next day I got a call from the director, and I could hear the excitement in her voice. I missed the call, but she told me that they had a new teacher in the room Eli would be in who was a retired DIABETES EDUCATOR! WHAT?! This does not happen by chance people! In my lowest of lows, God has once again put these people in my life to show me that this doesn’t have to be a lonely road. He is putting people on my path that I NEED. And to top off the Community Bible Study this year, I once again was placed with my leader from last year who gets me, and whom I like  to think I get a little, too. So many blessings there. There was also another T1 in my little group. She has given me so much hope on the rough days. She has helped me carb count cupcakes, sort through blood sugar craziness...It has all been a hand from God in the year I wasn’t sure we would survive. I made it to that last final meeting this year...and even though I spent half the time trying to stabilize a little boy...I was there. And my heart is a little sad that we won’t be back next year since LJ is too old, I am so thankful for the time and the people. God placed them all.
I’ve got one more new person, believe it or not. So we have been wanting to join a homeschool community once Kaycie was kinder age (?! Yes ?!). Anyway, I found a community that Kaycie and LJ can not wait to be involved in for the fall. We have joined a homeschool community for next year. We will meet once a week. I had emailed early on to ask about the childcare for little Eli. Even though I do all of his care myself, I still don’t like people being afraid of it or turned off or...whatever. The sweet mom who does the childcare immediately responded back that her little brother was diagnosed with Type 1 when they were kids and that she is totally comfortable with it. What?!? Praise God! Again, This is not chance! God places these people in our lives when we just NEED it. 
Not all days are good. Not all days are even seemingly bearable, but we will live our lives to know God.  To trust Him. To make Him known.
All of this novel to say..God is real. He shows up in our weakest moments and rejoices in our victories...he creates them! He sends those angels when we need them. May 24, 2017 was a really bad day. We will spend May 24, 2018 celebrating all of the sweet moments He  has given us this year. The victories, no matter how big or small. I gave birth to my own little super hero. And in the process I have seen our Savior come in big ways...such big ways. Our exhaustion and frustration with this disease has given my entire family a new perspective on life, on grace, on boldness in the face of adversity. We will celebrate May 24 as a day that our super hero showed up big and strong and so has our Savior! 

T1D offcial...rants, raves, and nonsense

So, now that I have covered the diagnosis...where are we now? We are truckin'. One foot in front of the other (well, besides Kaycie, who broke her foot jumping off the back deck last week...she's not truckin'...she is hobblin'...but she is testing the strength of her hot pink cast as she doesn't miss a beat in chasing the boys through the house). 

To start...I have learned a lot, my whole family has...about the truths and misconceptions of Type 1 Diabetes (T1D), so I will lay that part out there first. First, there is nothing we or he did to create this disease in him...it wasn't too much sugar, it wasn't a lack of anything. Type 1 and Type 2 diabetes are far from comprable. Type 1 diabetes is an autoimmune disease. Autoimmune disease is often genetic. Autoimmune disease doesn't always present in the same way from person to person. Type 1 diabetes, also known as Juvinile Diabetes, is most often discovered is kids (usually older than Eli), but it can happen on adults as well. One family member may have one autoimmune disease and the next a different one. Matt has Graves Disease (thyroid, and while I had my thyroid removed as well, it was not due to an autoimmune disease). Auto immune dieseases, while typically genetic, do not always present themselves in every person that carries the gene...They need a trigger...basically a perfect storm. In Eli's case, he had a "just a virus" virus 3 weeks before diagnosis. He had a 105 fever that subsided in a day or 2. I never even took him to the doctor. The doctors believe that whatever that was, was his trigger. It triggered his immune system to fight and kill the insulin producing beta cells in his pancreas. 

The autoimmune aspect is what has always been I the back of my head. Praise God for a doctor who informed me when LJ was in the nicu, that autoimmune diseases often find a back door into the body. If we had waited any longer...even days, his body would have been in shock, and he would have been very ill.

Now, those beta cells don't die off completely immediately. Once on insulin, they may decide to spit out its remaining insulin stores for years. It is funny enough called the honeymoon period. I may dose one meal today and be good. Tomorrow I may dose the exact same meal, and his numbers go bonkers. We don't know what his body will decide to spit out at any given time. Therefore, we go from massive highs to super lows, depending on the day. It means that right now, Eli is getting finger pricks 10-12 times a day, every 2ish hours at night because he tends to fluctuate, and he is getting at minimum injections 6 times a day and up to 8, depending on his levels. 

I count every carb that goes into his body...every gram of food has to be accounted for. Meal times start well before it's time to eat with weighing food, adding carbs, looking at labels, and checking premeal blood sugar. We finish up by deciding what he has actually eaten and an injection. Many days it becomes a "swag" or scientific wind ass guess.

Eli can eat whatever he wants. He does not have to be on a low carb diet. Kids need carbs to grow. He simply needs help processing them. Some carbs make his body happier than others. For example pizza...we have sworn off pizza for the time being. However, a 30 carb banana is good. He doesn't have to pass up dessert at a birthday party. He just has to have insulin to process the foods that you and I process naturally.

Eli is doing his own finger pricks already. He needs help getting the blood to the meter after the finger prick, but every day we are learning. He gets up in the morning and says, "Mommy, check me!" Yesterday he woke from a nap telling me he needed some chocolate milk. It was odd for him because he only ever gets it when he is low. I asked how he felt, and he told me, "yucky." Sure enough, I checked him and he was at 68, which is pretty low for him. He is figuring this out!

We are getting some paperwork done to get a Diabetes Alert Dog when the time is right (we don't want 4 dogs, but we have 2 that are old and struggling a bit, and the waiting list averages 4 years, unless of course, we can shell out about 20k now). That will happen in time. 

We are part of a study that tests family members for auto antibodies that can predict type 1 in family members. We have all had our bloodwork done and patiently waiting on results. 

My biggest issue is the lack of understanding, the stigma, the comes with the diagnosis...please...don't send me diet plans that will "cure" this monster. Don't insinuate that we did something wrong or that we could have prevented this. (Yes, I have gotten multipl
e of those types of messages, most from who shoiud know better). There is a lot of headway being made in type 1 diabetes research, and my faithful prayer is that one day Eli's burden will be lessened. Eating fewer cookies isn't the solution.

So, to answer one more recouring question...what happens if he gets too high or too low...well, too low and they can pass out, have seizures, if no one is there to give an emergency medication...coma, and eventually death. If too high, they can develop Diabetic Keto Acidosis (DKA). This is what many newly diagnosed children present with...illness, vomiting, ketones, and again, if not treated, death. Too far in either direction is not good. These things can happen quickly, amd so far Eli doesn't show severe symptoms when he is ha ing them. Our goal is to maintain the happy medium. 

2 weeks later and finally getting back to this....

Eli is doing well, and mama is getting used to the night time wake ups, sort of. Eli has his first appointment with the actual doctor today, and his long term numbers were given a head nod, we were once again told that "we are a good pancreas", and we were approved for a continuous glucose monitor, which is a little pod that will be attached to his skin 24/7, that reads his glucose numbers every 5 minutes and sends it to our phones, even if we are not with him. He may be one of the few 2 year olds you see with his own cell phone. It will help track trends, if he is rapidly rising or falling, and will alert us if he isn't in a good range. This will allow us a little more freedom from the pokes, it will allow us to leave him in Sunday school for an hour while still being able to constantly be monitoring his numbers.

That said, I believe Matt saw the mama bear fire coming out of my ears today at our appointment also. My pants caught on fire , and I couldn't stay in my seat. This mama doesn't bow down to a doctor just because they have an "MD" after their name. Sorry docs out there...I am probably your worst nightmare.

We decided from the get go, given that we are a dog family, that we would one day get a DAD, or a diabetes alert dog. You read story after story of these dogs being such a huge help and blessing to alerting when their owner is high or low, even before the technology does. I have inquired to a few places, and typically the cost ranges from 20-25k for a trained dog. It is a blessing to have an organization locally that trains dogs and gives them to clients, no cost. I used to have them come speak to my students when I was a teacher, never thinking I would ever need one of my own. 

Anyway, most of these organizations don't require doctor approval. This one organization does since they are a 503c (? Or 509 or 8675301?), and they want to make sure all their dogs will go to loving, needed homes. Today, I brought in the paper that needs the doctor signature, my last step in the process...I have done the legwork to get everything else done already. The doctor REFUSED TO SIGN THE PAPER! 

When I nicely asked her why, she said, "With all the technology out there now, it won't make MY job any easier for YOU to have a dog." Yes, she did. As if HER job was the biggest concern.

In my head, I asked her if she had ever been awake all night waiting to see if her child would go to high or too low. If she had ever been terrified that her child would go to bed at night and simply just not wake up in the morning. If she had to carry an entire backpack of supplies with her every time she walked out of her house...needles, syringes, insulin, glucogon, alcohol wipes, a notebook to do the math, worksheets to track the numbers. The reality of it is...no. Her answer was no, without even asking.

So, what I did say instead...I referred back to Kaycie as I went from sitting to standing. She had no idea mama bear was coming. I told her, "So my 3 year old was diagnosed with severe hearing loss amongst other things as an infant. I am no stranger to independent research. When she was diagnosed every doctor we spoke to had opinions...teach her sign language, absolutely don't introduce sign language, do hearing aids, don't do hearing aids and let her figure it out, get early intervention involved, don't get them involved, seek out private therapy, don't seek out private therapy. Send her to a publoc preschool, dont do that. At the end of the day, we did ALL of these things for her. We put as many tools in her toolbox that we could find. We found the best of the best for her, we followed the process, and guess what...she went from a significantly struggling infant to an almost 4 year old that has well surpassed her peers. Some things we discovered we were ok without. Some of those tools that doctors said she didn't need...she thrives on those. So I don't expect or need your opinion on whether a service dog would be beneficial to my son. We plan on putting all of the tools we can in his toolbox to help him survive, and we don't need your signature." Boom. Her response was, "Yeah, good points, but I won't sign." No need for you lady. It won't help us, but maybe she will think about it again when the next person asks. In the meantime, we will be getting a monitor in the next few weeks, I have a friend who will teach me the ropes, and we are calling a new doctor. I usually love Children's Healthcare of Atlanta doctors, but I also don't mess with ones who only do things for their own ease and comfort. You don't care about my child. You care about filtering me in and out as fast as you can and sending me some obsurd bills. No worries folks...I'm on it.

I'm sort of looking forward to walking into that hospital one day with our service dog, and waiting for them to tell us we can't be their patient anymore...no worries folks...I always have my plan in place. 

In the meantime, Eli doesn't leave my side, we are so blessed that he has taken this all in stride, and I apologize if I seem bitter. If you look back a few many blogs to when Kaycie was a baby, I believe I got lit with the same sort of fire. Don't tell me no. 

At the end of the day...we are fighting. Eli is no worse for wear, LJ and Kaycie are adjusting amazingly well...and we will keep going with joy and maybe a little sarcasm mixed in!

He is rockin' his new shirt!

An Unexpected Beginning...again.

It's been awhile...almost 10 months. I had decided to stop this blogging things and just live life. However, our journey has been a roller coaster, I have gotten alot of questions, and I have always felt like getting it all out there is cathartic to me if no one else....so here we go! There may be multiple installments, as I write a lot :)

On May 24th (3 weeks and 2 days ago), I took Eli to the doctor. Over the previous few weeks, I had noticed his increasing thirst, and then I kept thinking he was getting skinny...not growth spurt skinny, just skinny. And he eats non-stop. The day before I had called our pediatrician and inquired about if I should be concerned...I was pretty much told that it is a phase, don't stress it. After I pushed a little, they agreed for us to come in the next day for a checkup. 

I will back up here and add...Matt has an autoimmune disease (Graves Disease), and I have always had in the back of my head the warning that one of LJ's NICU doctors gave me. He said that autoimmune diseases are often hereditary, but that they don't always present in the same way. Type 1 is also autoimmune. 

On the way to the appointment, I got behind an accident and was worried about being late. No joke, I almost called the office right then to cancel...I mean, we had a full day ahead of us after the appointment, and in the back of my head I kept asking myself if this was a waste of time. Needless to say, I made it to the appointment, three little turkeys in tow, and they got us right back. They checked his weight...down 4 lbs since his last check 6 weeks prior (for a 28 lb kid, that is significant). They didn't waste any time in checking Eli's blood sugar...I mean, this was supposed to be a quick in and out "peace of mind" visit. Instead the nurse did the first prick, and the meter just said "hi". Me, I figured it was an error. She tested again. "Hi". And one more time just to make sure. "Hi". I finally said, "So what does that mean?" I have no experience with glucose meters, so to me, it meant absolutely nothing. The nurse responded by saying, "Well, the doctor will be right in," as she scuttled out the door. A few minutes later doc came in, tested again with the same result, and that's when he looked at me very seriously, and said, "I don't mean to concern you, but..." At that point everything became a fog. He started telling me about how the "Hi" means that his blood sugar is beyond what the meter measures. It measures up to 600 and anything over 180 is too high. He was telling me to get to the Children's Hospital, that he was calling to expidite us, and not to go home, but to make some phone calls on the way to arrange for someone to pick up the other kids and for Matt to meet me there. The last thing I remember him saying with pitty and sadness in his eyes is, "I hope I am wrong..."

We got to CHOA, where my mom met me to take LJ and Kaycie, and we were whisked back to a room immediately and blood was being drawn, IV's were being started, and I was still in a fog. At this point I knew. I knew. Dammit, I knew. They kept asking if he had been sick recently. That's when I remembered he had a virus the first week of May (I only remember because I missed my last day of Bible Study because he had spiked a 105 fever that left as quickly as it came). They kept reporting blood test numbers, and all I remember sayin is "Does this mean my son has diabetes?!"  They informed me that may have been the trigger that set off this whole disaster. And here I was just thinking I was being a cautious overbearing mother. Even as we sat in the ER, Eli was becoming more agitated, it was like a fast downhill slide. By the time Matt walked in from work, he was being admitted. We were being told that we were lucky we took him in so soon, before he got deathly ill. We were being told our lives will be changed but we can "manage" it. We were handed an entire backpack of information, and on top of that all of a sudden learning how to do finger pricks, draw needles, give injections, check ketones, administer emergency glucogon, count carbs, learning carb ratios, correction formulas, what numbers to call when things get to high or low, what number to call to report our numbers each day, what foods help, what foods can cause issues, you can feed him like normal, but if you feed him like normal it won't always work in your favor, pumps, continuous glucose monitors...oh, and it will be like having a newborn all over again, among other things.

At the end of night one, my head was spinning. Eli was miserable at this point, and we had no idea how to care for this kid that we have raised for 2.5 years. I still feel raw. 

Of, course we are home now, and figuring out things more each day, but he and I are exhausted. I keep thinking...they said it was like a newborn, sure. We wake every 2 hours and battle the highs with insulin and the lows with 2 a.m. juice and candy parties, which subsequently give him a sugar rush. Which, half the time end up in a high number that we have to adjust yet again. Where newborn days had an eventual end, it is sinking in that we will be doing this for the rest of his life, or mine. The. Rest. Of. Our. Lives. We will be fighting this stupid disease. 

In my head, I had to keep reminding myself that God is faithful, but I have battled anger, I won't lie. I have questioned...God! We have been given 67 Nicu days between the 2 boys, hearing loss battles and all of the repercussions of that, and now this?! One thing gets better and a new hurdle comes in to play. I try to put on a tough exterior and play the game, but I am tired now! I keep having to remind myself that we are tough...we are in this together, and I know so many families have bigger battles to fight than we do. I will keep praying, I will keep asking God for help, and we will keep on truckin'.

In the ER right after diagnosis

Later the first night after he got some fluids in him.

They finally let him eat! He has been chowing down for 3 weeks!

Kaycie is 3!

Kaycie is 3! Well, 3 and a few weeks, but who's counting 😉 Turning 3 has meant some changes in the life of Kaycie, and she is thriving!

We celebrated Kaycie's birthday with the family...my sister's family came in town from Chattanooga, and we got to spend the weekend playing and celebrating. We haven't gotten in to big birthday parties because so far the kids just love being with their family for a special weekend...we are holding on to that!

Now for a quick, not so quick update on the rest of the excitement! Upon turning 3, Kaycie aged out of her Early Intervention programs, so our support that we have received (besides our private therapies) was dropped. At age 3, they get rolled over to the public school system, if they qualify for services. We were honestly doubtful about receiving services because she is doing so well in so many areas, and they have to significantly qualify in at least 2 areas in order to get help. Long story short, we went to her first elligibility/IEP meeting not expecting much. Matt has never been involved in the process of IEPs, but being a teacher in my former life, I had an idea. I walked out of that meeting shocked, nervous, hesitant, and excited...all at the same time. Some things were not what I had expected, nor wanted, but we came to an agreement. Shockingly, where I thought I was going to have to fight for any services, we had to negotiate fewer services! They wanted her in their deaf/hard of hearing program 5 full days a week. That is the same times of an elementary school student. 7:45-2:15. No way. She just turned 3. We agreed that they can write the IEP however they want as far as times, but we would send her from 7:45-11:15 four days a week. The 5th day, we go to a bible study that has been wonderful for all of us.

She is 3 weeks in...I was so scared to send my baby to the elementary school everyday. Playing on the playground, the cafeteria, the building. They gave us the option of a special ed school bus, and I drew the line when they said it would come between 6:15 and 6:25. She is doing awesome! She loves going to school everyday to see "Ace"cuff (Mrs. Acuff), her teacher. And Joseph. Joseph is becoming  a new fixture in our lives. He is in 1st grade. He has cochlear implants and spends alot of time in Kaycie's class for services. They took to each other immediately. Joseph has a 3 year old little sister, and he watches out for her. He plays with her on the playground. He plays dolls with her in class. Everyday when we pick her up from school, Joseph walks her to the office holding her hand. He never says a word to us, but his little eyes say it all. There is this crazy immediate bond between the two. Kaycie is in a class of 3 (Joseph is a 4th that comes in part of the morning). They also have a parapro 100% of the time. Next week a little girl will start, who is completely deaf and only speaks sign language. Kaycie is gaining confidence. For the first time in her life she is around kids just like her. They have "ears".

In 3 weeks time, she has become a chatterbox...she is talking non-stop. She is self-advocating...she is telling me when she can't hear, and when her batteries die. She is asking for her aids in the morning, but telling me when she just needs a break. I am in awe of the little girl she is becoming. God is so good. So good.

Aside from school...Kaycie graduated from Occupational Therapy today! She insisted on wearing her fanciest dress...so yes, yes we did! They have some behavior interventions and goals in place at school that seem to be working, and we are making progress at home. She also had her 3 year follow up mri to see if the issues that showed in her first mri had resolved, and we got an all clear for that too! The minor issues have resolved, and her vestibules have remained stable (the cause of her hearing loss).

We are starting year 3 on such a positive note! I am so proud, I am so thankful, and I am so blessed by this little girl. I feel like now that we are getting clearance on some of our lingering bits and pieces, we are really getting to enjoy more time together and less at doctors offices. My little chicken nugget has big things ahead, I just know it!

The boys are doing so much too...I plan that update after LJ'S birthday on Thursday! Also..pictures. I will add some pictures! Only so much time in a day!

Woohoo! Sappy Mom Post

Such a big boy! You may think I am crazy dedicating a random blog entry to LJ losing his first tooth. However, over the course of the last month, something about his loose tooth has stuck with me, so stay with me for a minute.

LJ'S older cousin, Sam, recently lost his first teeth. LJ has been so excited about one day losing one because that means he is a big boy like Sam (Sam is 6). About a month ago, LJ informed me that his front teeth were loose. I thought no way...he is 4! However, when I checked...sure enough, they were wiggling. I kept telling him not to mess with them because in my head it was too soon. A few weeks later, however, his adult teeth started popping through behind the baby teeth! These teeth were on their way out!

Over the past few weeks, he has been working on them, we have tried pulling them, and he just keeps wiggling. Tonight, about an hour after bedtime, I all of a sudden hear over the monitor, "Mommy! Mommy! I need to give you my tooth!" Sure enough, the little squirt got one of the 2 out. I got him out of bed and we rinsed his mouth out, put his tooth under his pillow, looked in the mirror at his new grin, took some pictures, and he is now anxiously awaiting the tooth fairy. I wiped his face off before I let him see because LJ has a habit of being a little anxious. He asked my why I was cleaning him up before he could look. I tried to delicately tell him about a little blood. His response, "Mommy, blood is ok. It means that my body is trying to get better!" Wellll....ok then!

So here is my sentimental mommy moment. As you know, LJ was born at 29 weeks. We had to fight for 50 days to get him home and healthy. He has done amazing, and seeing him today, you would never know where he started. Every ounce of him amazes me. Anyway, at this point, the only lasting effects of his birth story are his teeth. They are horrible. Enamel is one of the last things that forms during gestation and then some of the drugs given to preemies kills their teeth. Dentist appointments are a drag (even though he loves going) because we are always in a battle of time and money discussing fillings and crowns and when they may need to happen.

Anyway, we have always been told that LJ's permanent teeth should be healthy and strong. This, my friends, is the beginning of the end of the last physical effect of LJ's rough beginning. It is the last physical sign of all the pain that came with his early days. So, while I am sad that losing teeth is a sign of growing up, and I could just keep him my little guy forever, it is an amazing that after all he has been through, with each tooth lost, he is one step closer to being my 100% healthy happy boy. Maybe God knew we just needed to close this chapter a little earlier than some. I am ok with that.

And now to save for orthodontics....;)

Edit: LJ went ahead and pulled his second tooth tonight (the night after the first). I asked him all day to get it out, but he told me that he could only pull teeth after bedtime because that is when the tooth fairy comes?! He had been working on it all day. Again, an hour after bedtime, he calls me in and asked for a paper towel so he could get a better grip 😄 I sat there with my eyes covered and his sister watched. He kindly narrated every move. My kid is insane...and pretty awesome. Bonus pics because Kaycie insists she lost one too.

Week one is in the books!

So...my after bedtime goal this week is some blog updates. My computer, the keeper of my pictures, has been on the fritz so I will add pictures once I figure that out, but I dont want my memories to fade in the meantime! I will add many of them later. A few I have on my phone. I have a bunch of random, mostly insignificant, updates to write about, but tonight I start with our first official week of school! I am pumped. So excited. So confused...and learning as we go!

 

Last Monday was our official inaugural start date for Pre-k for LJ. This is a year of learning for everyone in this house! We started early this year. The public schools start August 1, and we started July 11...why? Because we can! Knowing that a big move is likely this year, it is our first year learning the ropes, and LJ was desperate to start "Mommy School", it seemed natural. If we need an extra break at some point, or if we just need more time, we have it!

 

This year I got a complete curriculum. One 60 lb box of fun. If you aren't familiar with homeschooling curriculum, there are a million choices. You can get complete kits, you can pick and choose different things for different subjects, you can totally wing it using whatever you want. Since pre-k is new to me, I got a kit for this year (and I am already making notes as to what I like, don't like, and will change for next year and for Kaycie and Eli). We are doing Math, Reading, Spelling, Handwriting, Science, Social Studies, Critical Thinking, Bible, Art. LJ is a model student.

 

LJ is eager. He has always been, and I cannot give him enough information. I actually got a kindergarten curriculum knowing that we will technically have 2 years to complete it. I am learning, just as much as he is, where he excels and where he struggles. It is pretty amazing getting to know my little squirt in new ways. He loves math...numbers, shapes, patterns. He loves social studies and science and critical thinking activities. He is not as fond of handwriting...not surprising given his age. He does it, and he actually does ok with it, but he doesn't love it.

 

We have a lot of hands on activities that Kaycie has been able to jump in on (I also got her some of her own activities to keep her busy while LJ is working). We have been doing anatomy puzzles, learning about the energy from the sun using energy bracelets. We did some geography puzzles to learn the states and continents. We hopped, skipped, and jumped our way through learning what a time line is. We used manipulatives to count numbers. He has been using early readers to learn to read "like cousin Sam does." We have a bunch of critical thinking manipulatives that don't just teach him facts but how to think. He has been learning about patterns in art. We have been reading fables for literature. He is asking for more. I am sure there will come a day when it isn't so exciting, but we are going with the flow right know!

 

We also spent some time this week in the kitchen. LJ and Kaycie have been learning how to make sandwiches for lunch. Kaycie has had her apron on. She terrifies me with her lack of fear of anything, so I was worried about her being around hot things. This week she helped make waffles and spaghetti sauce. I had to take a deep breath and find some trust, and she did really well. We are learning about hot and cold things. They are finding their way around the kitchen, and it is so much fun!

 

My biggest concern so far has been scheduling. Between doctors appointments, gym time (socialization for the kids, and a moment of me time), nap times, and in general 3 small kids, it has started a little chaotic, but just like anything, we will find a rhythm. We got it done in week one. We will get it.

 

I have to share a secret. I know that many people are suspect about homeschooling. Is it worth it? Will they get the "socialization" they need? Will you be able to teach them everything they need to know? I was just as concerned. I know my family and friends are/were. Trust me. I know. I see the looks. It is worth it today.

 

We have a bible study starting in August...for me and the kids. LJ is enrolled in t-ball again (at his request), Kaycie has just been signed up for ballet again (she doesn't get excited often, but mention ballet, and she starts twirling with her hands over her head in excitement), and I am considering a gymnastics class for Eli.  There are co-ops, the list is endless. The socialization part is not a concern.

To share a quick story...I was so proud of him last night. My parents came over for dinner. LJ asked my mom to read with him, and then he pulled out a National Geographic geography book. He was flipping through telling her about Mexico and Canada, and pointing to where we live and where Texas is, and about how the mountains (Appalachian) we right above us. Then he flipped to a map of Europe, and said, "This is Europe. It sort of sounds like threw up." No, I did not teach him that fancy little rhyme. I was simply impressed he remembered Europe. I taught 6th graders who couldn't remember Europe. He then pointed to Antarctica and said it was too cold there. The kid is soaking it up! Even Eli counted to 5 yesterday! Kaycie walked around all afternoon today rubbing her belly and saying, "Mommy! I have testines!" (intestines)

 

I am sure not all days/weeks will go according to plan. I am sure I will continue to have my moments of doubt, but I am very excited about this. Probably two-fold. I get to see my own children blossom. I get to be a part of it. And, for the first time since I left teaching, I get to do what I was meant to do...teach. I am remembering what it is like to make plan lessons, to see the light go off when they "get" something, to change things up when it isn't working. And...school supplies. Who doesn't love school supplies?!

First lesson. Math. He was so excited to start!

Fine motor skills and critical thinking using some cool blocks.

Even Eli is getting in on some table time. He feels like such a big boy!

Doing some measuring with Inchimals.

Early morning art.

Even the pups have gotten in on the action...at least supervising the action.

So much JOY!

Mommy! I have testines!

Peas in a pod. They love the body puzzle.

Sullivan Family Small Screen Debut

About a month ago, I got an email from the media relations people at the grant company that paid for Kaycie's aids. They asked if I would be willing to do an interview with Fox 5 News in Atlanta about Kaycie and the grant. I got the email late on a Sunday night, and they were out filming Tuesday morning. I always said I would never voluntarily be on the news, but I am all about helping someone else if I can. Sooo...I agreed, and the kids thought it was so cool.

I told the reporter about my hesitancy in being on the news...he responded with, "Well, it wasn't your fault and you have all your teeth!" He promised they would edit it well, and they did. They cut out my involuntary rant about the inadequacies of private health insurance that we have run into over and over again.

http://www.fox5atlanta.com/health/fox-medical-team/139518266-story

Life Goes On

So, I have been absent from my little corner of the Internet for almost a year now, even though I have wanted to blog on numerous occasions. Life has just been busy, and when I do have free moments, I am most likely folding laundry! So tonight, I write. More for me than for anyone, but if anyone really wants to read what is sure to be a novel, here it is. Over the past few weeks, I have really felt like we are beginning to enter a new phase in our family. Baby days are ending, homeschooling is starting, and some days I even feel like I can catch my breath and really reflect on where we started, where we have been, and all the amazing adventures ahead. We are ready to take on all of the changes coming our way!

To start, LJ finished his second and final year of preschool a few weeks ago. It finally hit me that he is now solely in my hands. We have our curriculum for pre-k and we will be officially starting "Mommy school" as he calls it in the fall. I won't lie, as excited as I am, I am nervous. I spent many years in a classroom, but none of those years involved teaching a child to read! I will say though, that we have already been working on it, and he is doing awesome. He even sent my mom an email today without me even knowing (!). While most words were misspelled and he has no concept of the spacebar, I could actually read most of it!

LJ continues to be an amazing little blessing to our lives. He has his moments, but he is still just about the most loving thoughtful little 4.5 year old you could even meet. He is constantly nurturing his brother and sister, and he tells them just about every 8 minutes that he loves them and they are his best friend. He even told me he wants to marry Kaycie...we have time to sort all that out!

He LOVES to learn. He loves space and the human body, and maps. He keeps asking if we can do school lessons. He wants math. His current favorite thing is Google Earth. He could spend hours looking at the earth, at the countries, and asking about everything. It makes me so excited to really dig in to some things with him.

Eli is a lot like LJ was at his age...he is a cuddler and freely gives out hugs and kisses. He is genuinely hurt when you tell him no. He has learned the best way to a puppy's heart is to share his dinner. He even set a placemat for Bosco the other day. Oh, yes he did. It is hard to believe he is 1.5 already. Really. He has always wanted nothing more than to be able to do what the other 2 do, and I think he is finally big enough that he thinks he can keep up. He has been affectionately nicknamed "baby giant" by the kids because he seems to have a knack for destroyong their towers and toys as he wobbles along, like Godzilla. There are times where I am sad that our last baby is growing out of the "baby." Every time he grows out of clothes, and I take the next size up out of the attic, I have a walk down memory lane. It feels like LJ was JUST wearing the same clothes! That said, I am so incredibly excited about the kids being old enough where we can leave the house on a whim without having to worry as much about all the "things" a baby requires. We have some awesome adventures awaiting us!

Kaycie...Kaycie, Kaycie. She is just about the most complex little human I know, but I think after almost 3 years, we are finally on the right track to figuring out all things Kaycie. She has this quick wit. She makes us laugh, probably even when we shouldn't. She is very smart. She is developing a very affectionate side that took awhile to really start coming through. She has a temper and she is stubborn. I look at both as a positive for her if we can steer it in the right direction.

Kaycie has a lot of changes coming up in August that we are still waiting on, praying about, and trusting that God will direct our path. When she turns 3, her Early Intervention services will end. Our deaf mentor, who has become someone that I really count on(She comes to our house, so she sees us in the good times and bad. She has seen my tears through the hard times, she has shared in our many joys. She was the first besides my parents to hold Eli when he was born, LJ asks to see her) will also be ending services so that she can move on to help the next family. Kaycie has had an evaluation to see if she qualifies for the special ed preschool through the county. In order to qualify for preschool, she has to meet the requirements in 2 areas. Right now she does qualify with behavior and speech articulation. We will meet for her eligibility meeting in August, and plan her first IEP pending any drastic changes before that time.

We have also just put Kaycie back into therapy. Occupational therapy this time. We have had a rough patch. Kaycie's behavior can get a little overwhelming. There have been alot of little random things that we have experienced that, as I have always said, made me think we are missing a piece to this puzzle still. I had tried all the "tricks" in the parenting guide books to no avail. Meltdowns were at an all time high. Her pediatrician wanted her evaluated for early onset ADHD, but I wasn't sure. Her neurologist was concerned about absence seizures because of some weird "blank" sessions. I had some discussions with my trusty team and it was brought up that we needed an OT evaluation to see if they could pinpoint something, anything.

We ended up with 2 OT evaluations from different companies, we are working with a behavior therapist in our home, and all came to the conclusion that she has a sensory processing disorder, which can greatly affect behavior. It wasn't even on my radar. I have learned alot about SPD recently, and it makes SO MUCH SENSE! Her vestibules not forming correctly are what caused her hearing loss. The vestibules also control certain aspects of sensory input and emotion regulation. There is a reason! And all of the punishment/rewards/praise/etc. in the world won't do any good if we aren't starting at the source! Now that I have a better understanding of what is happening, we have already made so much progress even in the past few weeks!

Her body literally NEEDS heavy joint compression...heavy lifting, movement, etc. in order to function. She is a sensory seeker, hence all of the dislocated elbows (6 so far), and stitches already. Sort of an always seeking and never finding thing...no fear of diving off the couch head first, no fear of jumping off an entirely too high playground platform. She does not get dizzy because of the vestibular issue so she seeks it out (if you want some crazy reading, it still boggles my mind as to how it is all related).  It has also come to light that she still has the hypotonia (low muscle tone) issues that she was in therapy for as a baby. Soo...our house is now complete with a trampoline for joint compression (it calms her...terrifies me because of that "lack of fear" thing), a wiggle seat for mealtimes, a weighted blanket for bedtimes, a chewing necklace, silly putty...she thrives off of carrying in the heavy grocery bags from the car. It is working. In just a few weeks, I have noticed major changes in her behavior, in her coping skills, in her general demeanor. She is 2...she still has tantrums, of course, but my gosh I am feeling like we are on the right track again. One of the things that used to break me to the core was Kaycie having a meltdown and at the same time crying, "Mommy, I'm so sorry!" It was her realizing her behavior and just not being able to control it. Honestly, I was just about sick of people giving me a smile and saying, "Welcome to those terrible 2s...just you wait until 3." No, no...this is not my first rodeo. I have always known there is something else...I just couldn't pinpoint it. So...please...don't ever tell me that.

And for more of the adventures that I mentioned in my first paragraph...we are going to the beach in a few weeks with my parents and my sister's family. We are all so ready for vacation. We went to the store today and probably bought way too many beach toys. So is life! Last year the trip was fun, but Eli was still 6 months old, so I was nursing all day, having to make sure supplies were packed, worrying about naps...this year is going to be a little more free. That is the immediate adventure.

The life altering adventure that I have been trying not to think to hard on, but that we could especially use a few prayers for, is a move. A big move. A year ago we decided that instead of investing massive amounts of money more (this house has been a money pit...but we have  done a whole lot, assuming this would be our forever home and we have been taking the time to turn it into out little palace) into our current humble abode, we were going to redirect our money into saving for a new, bigger house for our family. We have been planning on staying local, but right now Kaycie and LJ share a room, and it is not going well. They need their own rooms. We have a 1400 sq. ft. house, and honestly space for trampolines, quiet spaces, and space to play safely outside are not to be had here. We have been focused. We were casually looking at houses. Our plan was that we would have enough money saved by after this beach trip we have been planning for so long. We have been diligent. We have been excited. We have prayed for the right time, moment, house. If you know us, patience isn't our best virtue, so we were feeling strong.

And then...God is directing us to Texas. The program Matt has been working on at Lockheed is ending next year. He was asked if we would be willing to move to Fort Worth. We have discussed this happening over the last few years, but it was always hypothetical. There are many logical reasons and God reasons, that we have to go at this point.

Sooo....my heart hurts. I will be 35 next week, and I have never lived more than 30 minutes from my parents. I cannot fathom not seeing them every weekend. My sister is less than 2 hours away, and while we don't get to see them every weekend, we see them a lot more than we will in Texas. Hence, the reason, I am just trying to not think about it. There are so many positives to this...followed by the negatives. This is home. I remember when I was 13, and I was so resentful about moving here....

It is funny how God has prepares us. We made a decision a year ago and have been faithfully preparing. We just didn't know at the time what He was preparing us for.

Matt was told anytime within the next 12 months a few months ago, so right now, we are just maintaining our course and taking it as it comes.

We are a work in progress, and I pray every day that we can continue to do the best we can every day to provide our children with everything they need in order to help them find success. Some days, many days, I am exhausted. I am scared. I get tired. I get frustrated. I have faith. I find courage when I feel helpless. I know that my God has a plan. My God will continue to comfort, to heal, to guide, to strengthen. Our trials are minute compared to some of those I love. We have already faced so any trials. Painful moments. Heartache. Joy. Laughter. If the Sullivan clan knows anything, we know how to face trials and rely on the grace of God.

National Dog Day

And since I am blogging tonight, who would I be if I didn't do a quick blog on the first 3 children, the "Osco's"! Especially since a few thousand dollars have gone to the vet this past week! These boys have been through a lot with me, and I am having a hard time wrapping my head around the fact that they aren't spring chickens anymore. That said, we still ring in the total with 235 pounds of dog!

Rosco is 10 now! Hard to believe my first little puppy is a senior! He is happy, healthy, and loving life. He has not had any more issues since his leg surgery late last year. He just may live forever!


Costco will be 10 in December. He is beginning to get arthritis, but honestly, he doesn't move around less than he ever did! He definitely gets an award for being the worlds laziest dog!

Then there is 8 year old Bosco. He just had surgery last week on his elbow because he developed an open wound because bits of his arthritic bones are chipping off, and he developed a tumor around it. The vet said it was the strangest thing she has ever seen.  We found out today that the pathology was normal, and he is doing great after surgery.

I took these pictures just now...however, any time of day, you can find them in a similar position!

Rosco

Costco

Bosco

Kaycie Turns 2!

Kaycie is 2! It has gone by in a blink. Life has been so incredibly busy, but a good busy!

 

In July/August we spent some time at the beach in Florida with my parents and sister's family. We had so much fun, but I will say that vacation is not quite as relaxing with 3 in tow! Kaycie struggled the first few days, but she seemed to love it by the end. LJ loves the water and is a little fish, so he was in heaven. Eli is just to young to care...but he is a go with the flow little guy, so he is happy as long as as he has a toy or person to play with. It was so nice to have built in playmates with Sam and Max, and we even got a little bit of time out alone, just Matt and I.

 

We have continued our regular apppointments with Kaycie, and back in May her neurologist convinced us to go forward with some genetic testing. She is doing so well, but she has all of the seemingly random diagnoses that they wanted to see if we could come up with some better answers. We found out last month that she does have a chromosome deletetion, however it is rare, so we haven't gotten a whole lot of information on it yet. They are sending us to Emory Genetics to meet with a doctor there that can help us figure out what it all means. They also want Matt and I to have a genetic panel done to see if either of us has the deletion as well. We have been stalling on it because we are currently fighting the insurance battle again, and it is exhausting. They love to call genetics "experimental", and therefore not covered. Until we settle Kaycie's testing, we are not jumping in to it. Emory schedules appointments way out, so we have some time to figure that out with insurance before her January appointment. We are at peace. The deletion is relatively small in comparison and she is doing well. This is the exact reason that we sort of stalled on doing it to begin with. It is so much easier to do now than it used to be and therefore, they are constantly developing new "syndromes" to go along with different deletions. That said, I always wonder how many adults have chromosome deletions and never knew it because testing wasn't so readily accessible. Sort of a catch 22 I guess. Now that we do know about it though, we would be ignorant to take the information and completely ignore it, so here we go. My calling is not genetics...so far we only have the report. I have gotten some experience reading medical reports in the past few years, and with most of them I have sort of learned to decipher them. This genetics report is complete gibberish to me though. All I know is that there are a couple of named genes (many are not named because there are so many, and many individually seem innocuous. The ones that end up with names are the ones that have become associated to specific symptoms) that Kaycie is missing. Interestingly enough, one of the "named" ones seems as though it is related to vestibule damage and hearing. Ding ding! We may have put together another piece of the puzzle without ever even doing the hearing genetic panel (we had chosen not to do that right now because at this point it doesn't make a huge difference, and insurance coverage is always iffy...I can only fight one battle at a time)! In that regard, I am interested to see what Emory has to say.  

 

Everyday we learn more about what makes Kaycie B tick. She is this amazingly sweet and smart little girl. She knows her ABCs, she is counting to 10 (and beyond but skipping a few numbers) forward and backwards, she sings songs, she speaks in sentences, she has just exploded in her abilities. She does something everyday that makes me pick my jaw up off the floor. She has a temper...my mom says it was like mine as a toddler. We are slowly learning the difference between a temper tantrum and a sensory meltdown. They are very different and have to be dealt with differently. She usually does great these days, but I do admit, every time I take the 3 kids out alone, I have to say a prayer first. I still cannot pinpoint when a meltdown will hit. Is she extra tired? What type of stimulation gets her? If she has a meltdown, at least one of my other kids will too. LJ doesn't like the screaming, and Eli is still just at that stage of crying when someone else does. I am that mom at the grocery store with screaming kids on occasion trying to get what I need as fast as I can because this chaos is better than tomorrow may be...please be nice.

 

She had a few rough days on our beach trip and pretty much refused her aids the whole week. It is her first line of defense against a meltdown these days. She will take her ears out and hand them to us...that is when we know she is on overload. Last week I took LJ and Kaycie to the denstist and she flipped. I never saw it coming. I am so happy in a way that she is learning to cope by taking them out, but it is also a reminder that she spends so much time on overload. That said, we are thrilled that she is starting to advocate for herself. She wants her aids in much of the time. If she wants them out, forcing her to keep them in is not good.

 

Kaycie had her 2 year checkup yesterday, and she is 34 inches and 27.5 lbs. She is exactly the same size LJ was at 2! She seems to be growing like a weed lately and losing that baby fat in exchange for turning in to a little girl. The doctor was very happy with her progress.

LJ and Kaycie started sharing a room a couple of months ago. That has been an experience. Once they are asleep they do well, but they are up way too late every night, so they have been functioning on too little sleep. We have a 3 bedroom house, so Eli had bee sleeping in our room, and he was getting old enough that our comings and goings at night were keeping him up. He still naps in our room and Kaycie naps in the crib. It is always a shuffle. We have decided that a bigger house will be back on the agenda in a year or two.

 

LJ-My sweet little boy. That is all I can ever say. He wants to make sure everyone is happy, and his heart belongs to his daddy. He started school last week. On day 2, I was told that he was using "potty" words in class...seriously...bathroom words. My kid thinks farts are funny and he was warning his classmates they needed to poop. Ho hum...on to teaching my 3 year old that farts aren't funny after all.

 

LJ does say the darndest things. I created email adresses for the kids awhile back. I will give them the passwords one day. LJ's is full of random statements. For example, tonight I asked what he would eat for dinner. His response, very seriously, was, "Sloppy Joes and grapes, but I am not going to eat the sloppy joes." At least he is brutally honest.

 

Sweet baby Eli--he is a funny little boy. Just laid back. He is 8.5 months old now. He wants desperately to play with the big kids. He loves to make a mess out of the playroom right after we pick it up, he laughs constantly, and he is a pretty good sleeper, although he has only napped once a day since he was about 3 months old. I have felt like I have finally conquered my one lingering desire in having babies, and that was to be able to nurse them. Obviously with LJ and Kaycie it ended in disaster, but I am so proud that we are going strong with Eli! He refuses formula. He does love his food though. I have taken a more baby led weaning approach with him because he always seems to prefer real food over purees. It is insane how much he likes to eat real food...after 2 children who haven't wanted anything until almost a year old. He does not seem to have the milk issue that the other 2 have either. That said, he will still end up on almond milk because that is what we all drink now. I am not buying him regular milk when no one else will drink it. He won't care :) Eli eats a full waffle for breakfast every morning...the exact same amount as his brother and sister. He loves fruits and veggies and potatoes and cheese. The first thing I discovered this week that he doesn't like is green beans.