Frustrated and Thankful

I am trying to set up Matthew's next appointment in St. Louis with Dr. Dobbs. He has become so busy now that it is really hard to get in to see him at Shriner's.

I sent an email to Kristina to see what days from April 18 - June 27 we could come in. Seems that of those 11 weeks, he is only available for 2 dates, and one of those is the only date that doesn't work for us because Craig can't take that day off of work.

I am so frustrated not because of the heavy workload Dr. Dobbs and his staff have taken at the Shriner's recently, but because of Matthew's old surgeon here.

For those who don't know the whole story, you can read it here. The short version is, when I asked Matthew's pediatric surgeon of 6 years if we could possibly go to the US for a second opinion, he was very rude and condescending to me, telling me that the doctor I had found was a nobody, that I had been internet shopping and that he refused to sign the paperwork that would allow me to obtain out of country insurance to see Dr. Dobbs. He happens to be the head of pediatric orthopedics in the city and works with all the other surgeons here. So, with him refusing the sign the paper work, my only other option was to go through Shriner's. Which we did and were so fortunate to have them immediately start the paper work for Matthew to see Dr. Dobbs.

And now, with Dr Dobbs so busy, he is now seeing older children at the Children's hospital to try and relieve some of the workload at the Shriner's. If it were not for the arrogance of the surgeon here, we would be able to see Dr Dobbs at the Children's. So frustrating.

And, I think I recall a clause in the paperwork for out of country insurance stating that if you start going out of country before obtaining the insurance, that you can not go back and request it after the fact. So, even if the surgeon here had a change of heart, my hands are still tied.

Frustrated. In fact, beyond frustrated right now.

And yet, so thankful.

Kristina (Dr. Dobbs' care coordinator) has spent the better part of the morning emailing me back all kinds of information to try and get Matthew in to see Dr. Dobbs at the end of June. Dr. Dobbs, Kristina and the team are beyond busy at the Shriner's and yet, I still get emails back immediately and they are bending over backwards to make it work for us.

And so thankful to the Shriner's, who took one look at Matthew's file and Dr. Dobbs' credentials and knew right away that this was the doctor for Matthew. AND had the paperwork and funding for him with in a week.

So, today, I am frustrated and yet thankful.

Just For Me

For a few weeks now, on Tuesday's I have been taking a Latin Cardio class followed by a Yoga Fusion class. I am pleasantly surprised to say I am LOVING it.

I need to be doing more for me. That should be the mantra for all mommies out there. So, I am trying. Once a week, I drop the kids off at school and head to a small fitness studio.

We spend an hour sweating and dancing salsa, bachata, with a little african and belly dancing thrown in. It is great fun.

Then, we spend an hour doing yoga mixed with pilates. The emphasis is on core strength. Right up my alley.

And the best part, it is all taught by a physiotherapist, who knows that most of us are moms desperately wanting our old bodies back, many with joints that no longer resemble that of our former selves.

A perfect mix, just for me.

Today, My Baby Is 7

I can't believe my baby is 7 yrs old today. I don't know about everyone else, but kid birthdays always bring me back to that moment/day when they were born.

Today, Ryan is on my mind. A few weeks before Ryan was born, we found out that I had IUGR, that Ryan was not growing, and that he would have to be delivered early. We were told all the possible problems and what a stay in the NICU could entail.

7 yrs ago, I was sitting beside Ryan's isolate in the NICU just watching him. I wasn't even allowed to open the little door and hold his hand.



I remember being worried for him, but knowing that he was doing better then everyone thought. I remember wondering how Matthew, only 15 months old, was going to deal with Mommy rooming in at the hospital to be close to the new baby so I could pump and feed him when the time came. I remember wondering how long before all of this would be behind us.

Ryan did very well and 5 days later, came home weighing 4 lbs 3 oz. I remember thinking 'am I even allowed to take such a little baby home?'

He was small (first day home)

But he grew quickly. (1 month and the last day he wore that preemie outfit!)

And today, I can look back and know that all of that is behind us. My boy is 7 today.

Happy Birthday Ryan!

My Lucky Day

It must have been my lucky day or maybe even week.

I took the shoes with the blue sole to see my guy Tony. Wanted to know if he had that color.

**small world, while I was there, Steve (Matthew's p/t) was there too. Chatted for a few minutes. Seems he now has another clubfoot boy (5 yrs) and was asking me some names, numbers for AFO's and such. Small world, or perhaps the way the world works...

Tony was out for a bit but the guy at the counter told me they could NOT do that shoe. They did NOT have blue.

Crap.

As I was walking out, in walked Tony. I showed him the shoe and told him what I wanted. Not even through the front door yet, he took the shoe and started walking to his work area.

And my man Tony said, "Of course we can do this shoe. I will cut the black part of the bottom off, and put a black lift on. It will look great."

Yay Tony!

Thankfully I chatted with Steve long enough for Tony to get back. Like I said, is it a small world, or just the mysterious way the world works? Had Steve not been there, I would have taken the other man's opinion and returned those shoes...

So, off to school to get the boys. Then down to the shoe store to measure his feet. Yup, I had the right size. Yay me!

I dropped the two left shoes off at Tony's to have the 1/2 inch lift put in. And the other great news? He thinks they will be done by tomorrow!

Talk about luck! But no, I am not going to buy a lottery ticket. I think I have just used up all my luck for the next week...maybe month!

Shoe Shopping

I love shopping for shoes... for me.

Matthew said to me last week, "Mommy, my shoes hurt."

Sure enough, he has grown out of all of his shoes.

For those of you who have been around this blog for awhile, you know that shopping for shoes for Matthew is never fun. There are so many criteria to meet for his shoes...

So, yesterday, off I went to the shoe store, AFO in hand, child in school, searching for the next size up. (Did I mention he is out of his AFO yet again with another blister? Will need to address that once this blister heals.)

Why do I go without said child to the shoe store? Honestly, it is easier. Because there are so many criteria, the number of shoes to try is limited. And it breaks my heart to watch him find a pair that he loves only to tell him, no, they will never work for you. So, I go to the store, try the brace in as many shoes that work, then buy what I can. Then, he can try that selection on at home. Less disappointment that way.

The criteria while at the store?

1. Must be non-marking.

2. Must have a sole made from a material that can be split and have a lift inserted. That means the sole has to be wide enough, and can't go up in the arch like so many shoes do these days. Oh and color... if there are multiple colors, then the lift will be very noticeable. And that is not cool.

3. His AFO must fit in it.

4. I try to keep the shoe under $40 seeing the lift that is added is $50. That makes each pair of shoes $90 or less.

Yesterday, I walked into a sale and I had a coupon! Woohooo!

This is what I walked out with.


That was a good shopping day!

Once the boys were home, I had Matthew try on all the shoes. Of course, he has his own criteria.

1. Must look cool.

2. Must fit his right foot.

Out of five pairs, two fit...kind of. It seems one size up may not be enough. I will have to get two sizes bigger and see if that is better.

Oh, and of those two pair that kind of fit, one has a sole that is a funky blue color. Matthew loves that. Tony (my shoe guy) may not be able to match it.

At least one pair may work.

Today, back to the shoe store to return 3 pair and buy 2 other pair. And stop by Tony to see if he can match the sole color. Then back home to see if those shoes work. Then return what doesn't, and have a lift put in to hopefully two (indoor and outdoor) pair.

I hate shoe shopping.

First Communion

On Sunday, Matthew took part in his First Holy Communion.

My little man all dressed up.

He was nervous, which we expected. What we didn't expect, was how excited he was.

Photos were not allowed during Mass. I am not sure I would have been able to take a photo of him receiving his first communion host, honestly, my eyes were brimmed with tears. It was a beautiful moment that will forever be in my heart. No photo could be more precious than that memory.

After Mass.

With Father Avi

We had a celebration at our house after with family and friends. Matthew got some wonderful gifts. I am still surprised that his favorite was ours. A leather book/case that holds a prayer book, rosary and a first communion pin. He has been reading it daily and working on praying the rosary.



Ryan is almost counting the days til his First Communion next year.

Through A Muddled Mind

This week has been a write off. It started Sunday night with Ryan, and is ending today with all three of us sick.

All week I have had one or both boys home from school. Ryan made it to school for 1/2 a day, Matthew 2 1/2 days. Up every night coughing and asthma attacks. That meant I was up every night dosing with ventolin, vicks vapor rub, tylenol and anything else I could find.

And my reward for nursing these poor sick boys, a head, muddled with the terrible cold they have. You know the feeling, where your brain thinks it knows what it's doing, but when you see what you do, you think that your head must really be attached to a different body. Yesterday it took me three tries to make my fingers, which felt like over stuffed sausages, to dial the right number for the school to tell them who was away for the day.

When the boys woke this morning coughing and wheezing, begging for ventolin, I thought things were going to get ugly...fast. I was pleasantly surprised when a few hours later only Ryan is coughing.

Maybe they are finally on the mend. I know my head has cleared slightly.

I would love to say we have the weekend to recover, but that isn't the case. Matthew has his first Holy Communion this weekend. Saturday is a retreat at the church and Sunday is the big day to be followed with a crowd over at the house after to celebrate.

I know I must be feeling better because I am both excited and panicked at the weekend ahead.