Where did I even leave off? (pauses to read last post) Oh yes, preparing myself for a beautiful fall. HA HA! Well October brought another trip to the ER for Stella (croup), an overnight hospital stay for Stella ON my birthday when I was also terribly sick because she had an ear infection and was refusing meds and fluids, Josie catching a bad cold, Mark busy at work, and my car battery dieing at the gas pump. Stella was diagnosed with asthma and put back on her inhaler and allergy meds this month. I had so much hope things would improve. I even scheduled a long overdue birthday trip to the spa, where I was rewarded with a nasty burn on my face from an inexperienced esthetician waxing my brows. That was super fun. We did manage to celebrate Halloween before the sickness returned. Josie screamed the entire time (social anxiety at it's finest), but Stella had a blast and I was so thankful we were able to take her out!
|Little dragon and Dorothy. Toto was in the basket but she wanted nothing to do with that!|
Now let's pause for a minute. I want to say something before I go on about the past few months. Life can ALWAYS get worse. I am thankful every second (and tell God daily) for all my blessings. But that doesn't mean we aren't allowed to be upset when life gets us down. I think at some point in our lives we all are going to face the eye of the tiger. It's what makes us human. It's what makes us lean on God. Some people's tigers are just a little bigger, a little meaner. But it's still OK to be afraid of our own. Keep the perspective, but allow yourself to FEEL.
OK. Moving on. So November... I got a call the first day of November that Stella was wheezing again at daycare. That led into another long sickness spell. I was so discouraged, I truly thought the inhaler would solve her recurring illnesses. At this point I think people thought I was crazy. Thought I was using it as an excuse to avoid outings. I felt like people weren't listening to me. Everyone told me "oh yea she started daycare she'll be catching everything" "oh yea they are sick all the time at this age" Call it mother's intuition, but I KNEW something was off. She just couldn't recover. She had been sick now for over 4 months. Even when she was better she still wasn't "healthy" I was growing tired, frustrated, and so so concerned. On top of that, Josie, Mark and I couldn't get healthy either. We kept passing the germs around. Think about when your kids or you get sick. Sometimes it lasts a week or so, at most. Even if it's only a few days being sick and having sick babies is awful! Really puts a damper on things until every one's better. Now imaging it lasting over 4 months. For your entire family. While you are trying to deal with therapies and mental disabilities of a 2 year old. Ending Early Intervention. Trying to get an IEP set up. Trying to wrap your mind around an Autism diagnosis. Having everything you try to do for the mental disability (therapy, daycare, outings) make her sick and delay her physical health. But then keeping her home trying to get her healthy and suffering setbacks mentally. I couldn't win. I fought a losing battle every single day. I never gave up, but I reached a whole new low. Or so I thought.
Stella's birthday was quickly approaching. November 17th. I sketched a wish list of all the things I wanted to do. Birthday pancakes. Her annual balloon pictures. Meet daddy for lunch. Maybe a picnic supper. Presents. I knew she was very sick, but I hoped every day she'd wake up better. That week was awful. She wouldn't eat, drank EXCESSIVELY and then peed even more. I changed her clothes and sheets multiple times a day. From Saturday until Wednesday (her birthday was Thursday) she got worse every day. Falling asleep everywhere. Putting herself to bed. Running into doorways. I called the doctor 3 times Tuesday. I took her in Wednesday. She had a double ear infection and was on steroids. The consensus was that she just felt lousy. But I couldn't shake there was something else going on.
Thursday her birthday arrived. She didn't eat the pancakes. Fell asleep holding her balloons. I cried all morning. I called Mark, who came home at noon. She asked for a happy meal. I went to town and got one. She wouldn't touch it, or her birthday cupcake Mark brought home. She put herself to bed at 6:00. I sat down and made a list of all her illnesses since July. I cried some more. I went back to her room and went to pick her up (she kept getting out of bed and laying on the floor). I could feel her bones. I cried hysterically, begged Mark to go the the ER with us. I told him I was afraid she had a disease, it was like her body was eating itself. He agreed. I packed up the girls, he started the car, and we headed to the Princeton ER.
|This picture breaks my heart. She is so thin and frail, and her eyes are so cloudy. Looking at pictures I can't believe how sick she truly was, especially on her birthday. That was the saddest day of my life.|
Stella was in the hospital from Thursday night until Monday afternoon. It was the worst experience of my life. I won't go into much detail. Someday I will, just not today. Not yet. She screamed. Yelling words and emotions I didn't even know she knew. She yelled she was mad. The doctors were monsters. She yelled she was scared. They lost her IVs. She still had that damn double ear infection. She had to get antibiotic shots. They were AWFUL. Respiratory came up for her inhaler. We had lots of issues with the hospital staff. Mark said he'd deploy to war again in a heartbeat before he'd ever want to experience that again. It was an experience that will forever be etched in our minds. It will always feel like yesterday. The scar of those few days is deeply seared in our souls.
|First admitted to OSF, the last night we were there when she finally got excited to open her birthday present (troll painting craft that she happily did for an hour!), and rocking the Life Flight shirt they sent us in the mail.|
We came home on a Monday, after a full day of training with two more days of training left to complete in the following weeks. Again, I won't go into too much detail yet. Basically Stella can eat anything, we just have to count every single carb. Try it for a day. Try to count carbs in a casserole. It SUCKS. Then imagine trying it out and about in public. Then remember this is a (just turned) 3 year old with communication difficulties who doesn't understand what's going on. The holidays were right around the corner. Pre meals mean a blood sugar check, post meals mean an insulin shot. 3 times a day, with a check and shot before bed. Plus at least one in the middle of the night. It's like learning to care for your kid all over again, like having a newborn. Oh yea, you also have a new baby too. At first the sugars were all over the place. Highs. Lows. I called the PDRC every day. I've always fed her healthy foods, but I grow so frustrated with her eating now. At first she ate a ton, now she is going through a stage where she never wants to eat or drink. To make counting carbs possible while we're overwhelmed, I use boxed foods. When she's low I have to feed her sugar. Snacks must be under 10 grams of carbs or they accumulate (or we have to give insulin for snacks too). This leads to a lot of sugar-free (aka chemical rich) foods. I am having to go against everything that is important to me. It sucks. But for now I do the lesser of two evils and just try to keep her blood sugars stable. I will work through the rest in time. It is a marathon, not a sprint. Except I'm a sprint kinda girl. Learning to adapt, trust me!
|Thanksgiving 3 days after we got home from the hospital. We spent it being oh so thankful at home.|
So anyways. The sickness. If Stella gets sick, we have to push fluids, check ketones in her pee, and correct with insulin accordingly. If she gets on antibiotics, they interfere with the insulin, possibly making her resistant to it temporarily. When Stella gets sick, she refuses liquids and medicine. Hence the previous hospital visits and stay. Now it's even worse. She was a sitting duck with one ear infected, and fluid behind both and her nose. So we have chose to delay Pre-K until after the tubes. We also decided to be hermits to expose her to as few germs as possible. Some people understand. Some don't. I really don't care. Trust me, it affected me the most as a SAHM hibernating at home with a teething 7 month old, a 90 pound dog recovering from an ACL tear, and a 3 year old with ASD and diabetes all trapped in an 800 square foot house during the winter. But it was the best option until we could get her tubes in, so that's what I did.
Despite being trapped at home in the winter, December brought a few positive changes and we really did make the best of it! Stella wasn't sick (other than her ear issues), and began talking and experiencing fewer meltdowns as a result of feeling better. She was in the "honeymoon" stage of Type 1 Diabetes (her pancreas was triggered to release the last of it's insulin when we started injections. this can last from a few weeks to a few years. this means we didn't need to give her much insulin, but her pancreas is unreliable. Sometimes it produces too much and we get scary lows. But it is a break from the shots and gave us time to compose ourselves and prepare for whats to come).
We were thankful for a good month with Stella, because as always we met several other challenges at the end of the year. Our heater broke and our septic system needed pumped again. I also tripped over the baby gate and ripped off my toenail and sprained some tendons in my foot. That made caring for my babies interesting!
We opted to stay home for Christmas. I was so desperate to keep Stella healthy for her tubes. I couldn't bare to reschedule, we'd been waiting MONTHS to get her in. I just wanted that poor girl to get fixed up and in school already. Add in Josie's social anxiety and I knew it would be more trouble than it was worth this year. Turned out I made the right decision. Several members of Mark's family got hit with the flu right after Christmas. BUT... We had visitors over the holiday. It was against my better judgment but I let it happen. And in case you couldn't guess, I got hit with the flu right after Christmas. Hard. It was the worst flu I've ever had in my life. I threw up so much for so long that my chest hurt for days afterwords from the heaving. So, even though I was better by New Years, I was all prepared to take Stella into the hospital should she get it. I literally spent the New Years weekend holding my breath praying over and over to God that she didn't get it.
|Christmas Eve snuggles, and Stella all dressed for our tour of Christmas lights in her jammies! Matching PJs and kisses Christmas morning. A beautiful and blessed Christmas at home.|
|New Years also spent at home. New Years Eve fun and matching jammies for a relaxing New Years Day!|
|Poor pink-eyed baby :-( Still all smiles after the drops got her feeling better!|
|Waiting for tubes on daddy's lap.|
|So happy for my dad and excited to have such a wonderful step mom!|
Finally around 6:00 they had a room ready upstairs for us. We were admitted upstairs by 7:00. At this time I was so tired and HUNGRY. Thankfully they have a late night menu. After eating we both fell asleep. We spend the next 2 days riding it out (oh, she tested positive for Influenza A too if you hadn't guessed by now!) She had to be better enough to eat and drink on her own before we left. Mark was at work or with Josie, so I was there with Stella alone this time (other than Mark bringing me some stuff Wednesday night). We were in isolation, so I couldn't even leave the room (because Stella was contagious). The coffee was terrible, I didn't sleep, and I was sick myself. Thankfully Stella's doctor called in Tamiflu for Mark and I to help us stay healthy and it worked quickly. After an extremely long few days she was finally better enough to go home. I was nervous but excited to leave. On the plus side we were actually able to get the Tamiflu in her and she kept it down, so that was a first! Really has me hopeful we can give her medication now!
|From a super sick little girl in the ER to recovering in the Children's Hospital with her beloved balloons to getting ready to leave and enjoying the view. Thankful they helped her heal!|
|LOVE these pictures. Shows how much fun she had at the dentist. Still talks about it everyday!|
|Finally feeling better and got his beloved Kong back! Not running yet, but walking him every chance we get and helping get that leg back to 100%. Love this dog!!|
|My beautiful girls. My inspiration.|
|The bravest, strongest, most special little girl I know. I can't wait to make her proud and teach her to be strong and FIGHT the challenges in her life.|
So the next few months (or however long it takes) will be all about family, health, and rebuilding all we've lost. I just want to pause from all social media and the world and just learn to live again in our new reality. Learn to thrive, not just survive. This will take all my mental energy and time as well. I look forward to coming back stronger than ever, re-vamping my blog (lets be honest it's long overdue!), and sharing more about our life and overcoming all of our struggles.
|My beautiful family. Time to heal.|