Tag Archives: learning to walk

2 years old

It’s amazing to think that my baby is 2 years old! He has grown so much in this past year! And it is such a miracle to still have him here with us.

We had a great time celebrating his birthday. Since it fell on a Sunday, we spent the morning at church. We dressed him up in a new little sport coat. They sang to him in his Primary class and he got to go get a treat from the bishop.

After church and naps, it was time to get ready for the party. Since Sunday dinner is a tradition for both sides of the family, we decided to invite all of them to dinner together.  I worked all the week before shopping and preparing food… ironic for a child who doesn’t eat. We did our best to pick foods he could share, though… and that wouldn’t take the party too long to eat so Patrick wouldn’t have to wait for them.

Patrick’s birthday dinner was simple, but his favorites. We bought him a personal sized bag of Baked Lays potato chips and a little cup with a bendy straw that we filled with water. Patrick LOVES eating chips out of the bag, so having his own was the perfect birthday treat and he had fun getting them EVERYWHERE around him.

After dinner, we gathered to sing Happy Birthday and blow out candles. Because Patrick can’t have milk, eggs, or sugar, I decided to make a non-food cake this year. I painted a round box and decorated it like a cake with cars everywhere, one of Patrick’s favorite things right now.

The street signs all had birthday messages on them. After blowing out the candle, we opened the cake instead of cutting it. It was filled with toy cars for all the kids to share.

Then we opened presents. Patrick made off like a bandit with about 20 small toy cars and a few big ones, shape sorters, balls, toy instruments and tools, books, puzzles, pop-up-pals and more.

Brian and I gave him our big present the day before so he could take it trick or treating… his very own Radio Flyer wagon. He wanted to help build it, so I gave him his toy hammer and soon he and daddy were both banging away.

It took me most of a day to clean up and make room for it all, but he plays with all the new toys almost every day… getting them out himself. He couldn’t be happier!

And the wagon – oh the wagon – has taught him a new independence. I can put his backpack in the wagon and he will push it around the yard all by himself for an hour or more. Just try to end this game before he’s tired and he’ll cry inconsolably.

Many thanks to those who helped to make Patrick’s birthday party a success. Those who helped cook, host, setup or cleanup. Those who made extra effort to come. And those far away who couldn’t come, but sent presents.

We all know what an absolute miracle this 2nd birthday is! Thank you for sharing with us in celebrating a momentous day!

Trick or Treat – but hold the treat

Because Halloween fell on Sunday this year, it was celebrated on early in Utah. This gave us the rare opportunity to celebrate Halloween and Patrick’s birthday separately. And just in time, too… as Patrick is just old enough to enjoy the ideas of costumes, walking, and collecting small things in a little bag. A perfect year to introduce him to trick-or-treating without the woes of having to make up for the fact that he’s not allowed to eat candy.

We started our celebrations on Friday. Brian’s office invited the children of employees to come in to the office and trick-or-treat desk to desk. So we got Patrick all dressed up and went to spend the morning at daddy’s work.

Patrick was a lion this year. We lucked out on the costume. We ordered it online… early… to allow time for me to make modifications to allow for his tubes and his brace. But no adjustments were necessary. The snaps were all in just the right places. And Patrick loved the hood (still asks to put it on to play) and the little mittens. He’d ask to put his hands in the gloves, then wave them around excitedly.


Our very talented friend Jillian made a little trick-or-treat bag that Patrick could carry on his arm to collect treats in. I had a larger trick or treat bucket to move things to when the bag got too full or too distracting.

Trick or treating in the office was fun. We went from floor to floor and Patrick got to flirt with the women, show off for the men, and collect lots of little candies in his bag. It was funny that, although he’s never tried candy in his life, he seemed to prefer the M&M’s. Brian kept trying to sway him to different treats, since mommy and daddy would be eating them, not Patrick… but Patrick was persistent in choosing the M&M’s whereever they were offered.

Saturday morning was still a flurry of getting ready for Patrick’s birthday party on Sunday.. but by afternoon we were ready to go trick-or-treating again.

We started with grandparents. Patrick enjoyed showing off his costume and playing with the little toys that each had gotten for him in lieu of candy. Then, we hurried on our way hoping to make it home before the day’s rain made it too cold to want to go out.
We made it home after the worst of the storm and ate dinner, but it was still sprinkling when we loaded him into the brand new wagon we’d gotten as a birthday present. The ward had scheduled a trunk or treat, but chickened out in the rain. So we went ahead with our original plan to just visit a few close friends.

At first, Patrick was happy enough and quite adorable. He’d wander up with me to the door and try to go in, then act confused when we put candy in his bag and walked away.

After a couple of houses, though, this wasn’t much fun anymore either. He didn’t get why we were doing this and his foot seemed to hurt, to boot. He started to cry whenever we took him out of the wagon, so we went to just a couple more houses and then came back home.

He was content to spend the rest of the evening moving his treats from his trick or treat bag to the bucket and back. He got sleepy and went to bed around 8, thoroughly worn out.

All in all, it was a pretty successful first attempt at trick-or-treat for Halloween.

Happy 2nd Birthday Patrick

Not many people get sentimental around Halloween. In our house, we just can’t help it.

2 years ago at 3:07 a.m. Eastern Standard Time, Patrick made his way into this world with much excitement. Doctors swept him out of the delivery room and into the operating room. The prognosis for him was grim. At first hours or days, then no more than 1 or 2 years.

That’s what we were told a few days later when we first heard about Patrick. Infections or liver failure would take his life within the first couple of years ago.

We were scared to hear that news and not sure what the future would hold. But there was something special about that beautiful little boy with the angel eyes and we loved him more each time we told his story and looked at his picture.

Last year, when we celebrated Patrick’s first birthday it was a big event. We almost lost him that year and his mere presence at home with us that day was a cause for celebration.

This year, not only is Patrick still healthy and still home, but he is amazing us as he grows bigger and stronger with each passing day. I didn’t imagine when we met Patrick that he’d be the vibrant little boy that his is now at age 2. On his first birthday, we had even more reason to wonder whether we’d ever see that day.

Patrick is walking. Not all of the time, but often and with more confidence in every step. He is learns more words all the time and loves having you teach him words for the toys he finds of the books you’re looking at. He loves the people he loves with an enthusiasm that’s hard to describe. He loves cars and Elmo and pushing his brand new birthday gift wagon. He kisses us goodnight every night and gives me hugs and kisses every morning. He adores his Daddy. He gets into trouble with his friends in music group. He likes chips and french fries and drinking from a straw.

He’s an amazing little boy whose love of life is contagious.

Happy Birthday Patrick. May this be one of many, many more!

Baby steps

I mentioned a while back that we were taking Patrick to see a doctor who specialized in rehabilitation and development. It’s about time I write about it.

The appointment went a lot more positively than I’d expected. I went in half expecting for her to see the muscle tone in Patrick’s foot and decide it was time for dramatic action. Patrick’s physical therapist had suggested botox injections and casting, and I was afraid that that was the next step.

I was so nervous, in fact, that I had Brian come along with me. That wasn’t the sort of decision I wanted to make alone. And he was kind enough to take the whole day off, which was an extra special treat.

They make you feel out a history every time you go into this office, including a list of everything that’s changed in the last 6 months since you were seen. This can be quite the task to list everything and I often just write blanket statements like “typical to short gut” so I don’t have to fill in all the hospitalizations, diet changes, etc.

The good thing about this form, though, is that it gives the doctor an idea of where to start, so she came in and right away said, “So why do you think he’s having problems with his foot?” We stripped Patrick down so she could see his muscles as he walked and then we had him walk back and forth between us. We also talked about the developmental lag I’ve seen on his right side versus his left. She watched the way he hold his hands when relaxed. She stretched his muscles to see how they move.

In the end, we didn’t decide anything new… but she confirmed a lot of things I’ve suspected. Basically, it looks as though there was some degree of brain damage caused by Patrick’s cardiac arrest. This isn’t a surprise. They did CPR for 15 minutes, which means that for 15 minutes, he didn’t have a good supply of oxygen to his brain. In fact, everyone’s always amazed at just how well he IS doing in spite of that.

This doctor, even telling me that there seems to have been damage, still calls him a miracle and says that he is far, far healthier than his medical history would predict.

The official diagnosis she gave is “dystonia”… which basically means “irregular muscle tone.” In layman’s terms, it means that his brain sends the message to move the muscle, but the message gets garbled somewhere along the way. The message the foot get tells the muscles to flex harder than they should or in the wrong direction. The faster he tries to go, the more the signal gets confused and the more unpredictable the movements.

She said to just keep working with him. She said that these muscle tone issues could vary in how much they affect him as he grows and the muscles relax or get tighter. In the future, they might still recommend injections of botox into the muscles to weaken them so he can have better control of them. But that’s not for now.

For now, we’ll continue to do what we’ve been doing. We’ll keep a brace on his foot and we’ll do stretches every morning and night. We’ll keep encouraging him to walk wherever he goes and we’ll hope that, like the rest of his right side movements, he’ll get better with practice so that you don’t even notice a difference unless you know what you’re watching for.

It’s a relief to have my suspicions confirmed and plan of action approved. For the past year I’ve been telling therapists that I suspected something was wrong. It’s only been since we started working on walking with his newest PT that it’s been clear that something actually was wrong.

It’s discouraging, though, too to know that he’s going to have this battle ahead of him. He’s young enough that his brain is very “plastic”, very adaptable and it is possible for him to overcome most of the effects of this… But it’s going to require a lot more effort from him and from me to learn to do those basic things.

Still, he’s making amazing progress with his “boot”. He spent 15 minutes yesterday walking 6 feet between his therapist and myself. Then, he spent most of the evening walking across my mother’s living room. He lets go when he’s playing next to furniture. He refuses to have two hands held while he walks. He is getting faster and steadier and braver. He’ll be walking in no time.

This Boot is Made for Walkin’

It’s been a few weeks now since Patrick got his brace, or as we call it, his “boot.” His therapist used this word the day she fitted him, and Patrick took to it. He sees me with his brace in hand and starts reaching and begging, “boo, boo, boo!”

It was hard getting used to the brace. For the first week, even an hour of wear had him grumpy, tired, and irritable. Daily stretches were the worst, as they worked the muscles that were already sore. I just kept pushing through knowing that things were supposed to get better with time.

The other awkward new adjustment was shoes. Patrick currently wears a size 5 1/2 .But, the brace measures a 7 1/2 in length, and when you allow for the bulky straps on the side, it takes an 8 to get over the brace. Obviously a size 8 shoe is too long for his foot and this difference made him seem a bit lopsided while he was getting used to it.

I really want to get over to Nordstrom, who have a “mismatched shoes” program and employees who are actually trained to help fit shoes, instead of just measure feet. Shopping for a spare shoe at Payless the day we picked up Patrick’s brace was frustrating and traumatic. I’ll forever pity the poor teenage associate tasked to wait on us.

But I digress.

Patrick has since made a wonderful adjustment to the brace. He even knows how to help me more easily get it on, if he’s not distracted with something else.

It helps. No longer does his little foot betray him at random, popping up or turning in and making him fall.  He doesn’t veer into the wall every 5th step while walking halls in therapy any more. (It takes more like 40 steps.)

He’s getting brave enough to walk more and more. He takes several steps between his daddy and me (or other adults he trusts.) He forgets sometimes that he doesn’t want me to see him stand, and lets go to play with a toy. I’ve even caught him walking along the edge of the couch without holding on – just reaching out and touching every few steps to assure he’s got his balance.

 

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There is still improvement to be made. At least once an hour his heel still pops up inside the brace – quite a feat, considering how much there is holding it down. Only then it gets stuck. I’ve learned that if he’s crying and begging for my help, it’s probably his foot.

His foot does still turn in a bit, too.. or I should say that his leg does from the hip.

We’re meeting with his rehabilitationalist today to talk about whether or not we need to take more action than just the brace.

But for now, my little munchkin is happily practicing walking. We walk everywhere. I’ve learned to allow extra time for such adventures. For example, we spent an hour picking up 3 items in the grocery store so that he could push the cart. We arrive, when possible, 15 minutes or more early to appointments so that he can hold my hand and walk inside. And we take walks around the yard and neighborhood.

These last take the most time because for the first time, Patrick can explore the things he’s been looking at for 2 years on his walks so we have to stop often to let him touch the fences and flowers and rocks along the way. I don’t mind. He’s earned it.