I Don’t Know How She Does It

One week. That’s all I did. One week and I am exhausted!

As she recovered from surgery, I took on all the responsibilities of my wife for one entire week. I look back in amazement. I just don’t know how she does it. How does she manage the calendar that she keeps while I am at work? I don’t even know!

Before I explain just what a crazy week it was let me share an incident to set the stage for you.

The first night the kids are home, I am getting them ready for bed. I administer the bedtime medications, I get them in pajamas, we brush teeth, etc… From my bedroom, my wife calls from the bed,

“What are you doing?!”

“I’m getting the kids ready for bed, why?” I reply.

“Well, that’s not the way I get them ready!!!” she says.

As she laid in bed, it drove her stir crazy to know that she wasn’t doing the bedtime routine! She likes things done a certain way, and she hates to not to be able to do it THAT WAY.

So just what did my week entail? What rollercoaster ride of craziness was I on for a week? Here’s just a peak…..

Wednesday of last week the kids came home. Without time to even acclimate to this new schedule, I was caught up in it with no time to look back! I guess I never knew just how much she juggled each week.

One night there is dance class, which runs well past dinner time. So then there has to be dinner before bedtime because tomorrow is a school day. Bedtime is later on dance night. It isn’t easy to fit it all in unless you drive through somewhere.

The next day, you drive to school and drop off. You squeeze a few little things in before you are off to the school again to pick up. From school, you have time to grab lunch in time for Occupational and Physical therapy. Then you are finally off to get home by mid afternoon. Bath’s before bed on this night, followed by story time, teeth brushing and bedtime.

Chances are there is a doctor appointment the next day, so you are up early and hurrying around to get yourself ready as well as the kids. If one is staying with Nana, you drop off there and head down to the appointment. Maybe it is the ENT, the sleep doctor, or a visit to the primary care doc. You never know.

The next day you are at the mercy of when the grocery shoppers have finished your order. Hop in the car and go to the designated spot, text them that you are there and wait for them to bring the groceries out. Drive back home and unload the groceries. Clean out the fridge and freezer so you can put what needs to be cold in there. Maybe you get a minute to enjoy half a cup of coffee here while you wait for the dryer to ding. When it does, swap loads and fold the clean stuff.

Make dinner. What’s for dinner? Who knows?! But it needs to be something that they will eat. It’s anyone’s guess if they will eat what is on their plate, even if they loved it a week ago. While eating, be on the look out for the kitten, who seems to think human dinner time is also her dinner time. Shoo her off the table!

Bedtime again. Bath’s first? I don’t know, depends on the day! When the kids fall asleep, sneak out so you can pick up the toys from the front room floor. Maybe you can sweep, vacuum or even mop the floor before a child knows you are not in bed and they come looking for you.

In between the semi-schedule, you have to break up fights. You have to explain why you don’t put forks in electrical outlets, and answer the 18 “why?” questions that will ultimately follow your explanation. You have to switch food from the pink plate to the green plate because today that is the color they want. You have to drink a glass of white milk because they wanted chocolate milk when they asked for “milk.” You have to be the bathroom police and ask “Do you have to go pee?” every now and then because they might forget and have an accident. You call both children by their first and middle names because they are doing something they aren’t supposed to. You have to go get a “snack” for them, even though dinner was over 12 minutes ago. You have to watch the same episode of Blippi for the 87 millionth time and restrain yourself from wanting to punch him through the screen. On and on the list goes…..

… and my wife MASTERS this chaos EVERY NIGHT! My God, she is truly a marvel.

I have walked a week in her shoes and they do not fit! There are not enough kudos to bestow upon her for all that she does to make our house run smoothly. She is a miracle … and I love her so very much.

Today, I’m a Worry Wart

I have posted this quote before, but it fits today (and hopefully will help). My grandfather once told me, “Worrying is like a rocking chair. It gives you something to do, but it doesn’t get you anywhere!” Despite the truth of that, I find my mind all over the place.

As you are aware, my youngest son recently had a second surgery for his laryngomalacia. He had a follow up visit with the ENT last week and the swelling was still there. The doc said that it should have been gone by now. They did a scope in the office and found that aside of the swelling, everything looked good.

The ENT then sent off a note to the pediatric sleep neurologist saying that he didn’t feel that Andrew’s apnea was something with his throat. He told her that he thought it might be something neurological. She thought that might be the case, too. Andrew actually had a visit with the pediatric neurologist this week. We walked away from that visit with more questions and some concerning possibilities.

He is already in speech because of the original delay. Now, he is dropping syllables in words, or changing them to a different letter. “Mommy” is now “monny.” “Daddy” is now “dah-eee.” The speech therapist had noticed that it seemed as though he was losing muscle tone in his face. The neurologist feels the same way.

It was a very long appointment. At one point, after reviewing the symptoms and giving him an exam, she said, “What am I missing?” She thought a bit more and presented the plan. We are at the point where we need to start ruling stuff out. There were many procedures ordered and we are going to be very busy.

He will have a 24 hour EEG, a brain MRI, generic blood workup, and yet another sleep study. The EEG will help rule out seizures. The brain MRI will help to rule out cerebral palsy. The sleep study will evaluate where his apnea is at and the possibility of another CPAP machine. The generic blood work is to rule out things like Fragile X syndrome and other possible genetic disorders. He will also see a specialist to rule out things like Muscular Dystrophy.

As a father, these things brought my stress levels sky high. Andrew has already been through so much. I don’t want to have to put him through any more, but we need to know what’s going on. Our neurologist applauded Sam and I for being proactive. Our medical backgrounds really made us question a lot, and she said that we are ahead of the game.

Sam keeps me balanced. I expressed my worries to her and she told me that we can’t worry about what we don’t know yet. There are a lot of possibilities, but until we have something to worry about, Sam and I will pray that all will be ok.

It helps me to write this down for a couple reasons. First, seeing it in front of me “gets it out.” Next, it allows me to fill folks in who are asking about what is going on. Finally, it allows me to expand the prayer chain. If you pray, can I ask that you keep this fine young man in yours?

Thanks in advance!

Another Surgery Soon

My youngest son, Andrew, has had his share of challenges in his almost two years. After his first sleep study, he was diagnosed with laryngomalacia. It was causing him to have sleep apnea. A surgery was done to correct that problem. While in surgery, a cleft was discovered and the surgeon filled it.

Three months later, he had a second sleep study and his sleep apnea index had gone down, but not quite enough. We opted to try CPAP, which meant a third (CPAP) sleep study. It worked for a while, but because of a lack of proper pediatric CPAP masks, we wound up stopping and attempting to treat it another way. Medications to help open nasal passages and the airway were prescribed and they seemed to work well, as he was sleeping a bit better (despite some louder snore).

Just before the Fourth of July, he had a fourth study and we discovered that his apnea is worse than it was last time. We also found that the laryngomalacia, which he should have grown out of by now, was still an issue.

Andrew had his visit to the ENT today and there was quite a discussion. It seems to the doctor and his colleagues that the main issue is the cleft. They will probably have to do a deeper scope to make sure there isn’t another cleft. The goal is to repair the cleft or clefts. They may remove tonsils and adenoids, too. Either way, it is a much bigger surgery than we anticipated.

He will probably be in the hospital for a few days, perhaps in ICU. We’ll be awaiting a call to schedule surgery Monday. They think it will be sometime in August or September. I found this video on YouTube, which only scared me more.

My wife and I are quite overwhelmed right now. We can only hope and pray that this will take care of Andrew’s issues and the healing will be fast and easy.

I thank you in advance for your good vibes, your positive thoughts, and prayers as we anxiously await a plan of action.

Proud Papa of a Papper

My son, Andrew, has had a hard time sleeping since he was born. We took him to an ENT and they found that he had laryngomalacia. A sleep study was ordered and it showed that the laryngomalacia was leading to sleep apnea (That’s what the photo above is). This led to a minor surgery to try to correct it. I blogged about that here:

Under the Knife

A few months after the surgery, Andrew was back in my sleep lab to see if the surgery had indeed corrected the sleep apnea. This time around, our pediatric neurologist wanted to check for seizure activity and muscle movements as well. The study results showed that the apnea got better, but hadn’t gone away completely.

My wife and I knew exactly what that meant – CPAP. We both have run many sleep studies on children and many CPAP titrations as well. They are not always an easy thing. I will be honest, I was not looking forward to running his CPAP study, anticipating that he was going to fight us all night long. However, to our surprise, he actually did quite well and slept most of the night.

Sam went and picked up his CPAP machine today. Before going on, I will tell you that the past week has been very difficult for us (more for her). They terrible twos are kicking in BIG time with Ella. Both kids have been a handful and hard to deal with. That being said, knowing that Sam was going to be the one to be with him for his first night at home with CPAP had me praying that all went well.

Sam said he cried for a little bit, so she put on Elmo. He calmed down and when she told him it was bed time, he laid down and went to sleep! She sent me this picture:

I couldn’t be more proud of my little C-Papper! What a champ! I know that this is going to really help him in the future. Hopefully, he will only need to wear it a few months.

Way to go, Kiddo!!!

Not Exactly What I Had Planned

Remember my last blog? Remember the list of things I had to do and things I wanted to do? Well, all of that went out the window this weekend!

While it is disappointing that I didn’t really get anything done, our kids are the priority. Ella has been extra whiney this week. We now know why. Late Friday night, she spiked a good fever. Saturday morning, we called our PCP to see if we could get her in to see the doc. Saturdays used to be for emergency appointments only, but I guess that isn’t the case anymore. They said they could get her in on Monday.

Well, Sam and I weren’t going to sit around and fool with that, so Sam took her to Urgent Care. Sure enough, she has a double ear infection. The urgent care doc said it looked terrible and prescribed some antibiotics. We went and saw PCP today and she scooped out a bunch of wax from one ear which really seemed to help. She told us she couldn’t see the ear tubes, which probably means they fell out. Because of that, we had to schedule a follow up with the ENT doc.

Tuesday is the Daddy/Daughter Pirate adventure I’ve been looking forward to. Whether or not we go to that is still up in the air. Ella is still not 100%, I caught a spring cold, and it is supposed to rain Tuesday. If we don’t end up going, I will figure out something else that we can do together.