Dr Appointments

This week we had a busy week with dr appointments. I say that like it is unusual!??! After a month of Ava itching her eyes and saying that her throat and nose itch, I finally took her to the doctor. I know, I should have gotten her in sooner. Come to find out she has allergies. She wasn't tested, but based on her symptoms we were told that she has allergies to rag weed. I guess this year it is really bad because of all the standing water. The doctor told us that a lot people that never had allergies before are getting them this year. So, we came home with eye drops, nose spray, and claritin. She is starting to sleep through the night again!!!

Max saw urology for the first time. At our last genetics appointment, the genetics doctor followed up with urology to see if they wanted to repeat an ultrasound of his kidneys because when he was diagnosed with RTS the did an ultrasound of his kidneys and there was a small amount of fluid in his kidneys. We also were referred to urology because about a month or two ago I noticed that one side of Max's scrotum looked bigger than the other. So we got to discuss both issues at this appointment.

As far as his kidneys, we are going to repeat an ultrasound. On his first ultrasound, they noticed a very small amount of fluid in his kidneys. On a scale of 1-4 with 4 being the worst, Max was a one. The dr is thinking the fluid will go away over time, so we are just going to have an ultrasound done once a year until the fluid goes away. Easy enough.

On to the scrotum. Max has a hydrocele that we are going to have fixed on October 20th. A hydrocele is a collection of watery fluid around the testicle. It was explained to us as a step before a hernia. The dr wants to fix it because he doesn't want it to develop in to a hernia and the fluid that is flowing from the abdomen to the testicle is warmer than what the testicle should be in which would cause poor growth of the testicle. I was hoping to not have to put him through surgery. It is just a minor surgery and is done as an outpatient surgery. But with Max's medical history, he is going to put him down for a 23 hour stay. This way they will have a room for Max to monitor him in after his surgery. And if he does well, we will get to go home. Max has never has a problem with anesthesia, but we just want to be safe. I am also going to contact his eye doctor to see if she wants to check the pressure in his eyes for glaucoma during the procedure since Max has large optic nerve cupping. This way we will be able to take care of two things at once.

Smelly Feet

Good thing summer is coming to an end! Because we had to put an end to Max's sandals. We could no longer tolerate the smell of his feet in the sandals. Ava also had Nike sandals in the summer a couple years back and they also made her feet smell awful. I bought these because I could get is short, wide feet in to them.

Baby Shower

September 27th is my older brother, Jeremy, and sister-in-law, Tashina's, due date for their first child!! Becky (my sister), Mary Lou (my mom), Danica (Tashina's sister), and I took Tashina to The Melting Pot for a night out before the baby's arrival. I made her a diaper cake, which turned out better than I planned. It was nice to have a night out to celebrate a new bundle coming in to the world. Best Wishes Jeremy and Tashina!! We can't wait to meet the new addition to the family!!

Tashina with the diaper cake. . .


Tashina and Danica . . .


Mary Lou, Kelly, Tashina, and Becky. . .

Sensory Play

The other day, I put chocolate pudding on Max's high chair tray and gave him a spoon hoping he would choose to eat the pudding with the spoon or his fingers. I showed him how to put his fingers in the pudding and put his fingers in his mouth. I also showed him how to use the spoon. Well. . . not too interested in eating the pudding, but it made for good sensory play!!

In

This week, Max has been working on putting objects in a bucket. Before he did not want to give an object up to put it in a bucket. When Ava was little, I never had to think of how all this play will help her fine motor skills when she got a little older to hold a pencil or scissors. Come to find out that dropping toys in a bucket is a step towards developing fine motor skills. The things I am learning!!

Girls Weekend

This weekend my sister Becky, Ava, and I went to Minnesota to visit relatives. My
aunt Ann and cousin Katee were also there to enjoy some time away. We had a great time relaxing by the pool, eating, shopping, and chatting! Ava and her cousins Elle and Gage were in the pool by 11:00 on Saturday and didn't get out until 5:00 Saturday afternoon. And then they went back in to the pool around 8:00 (this is without a nap all day)! Elle just turned four so her and Ava are quite the pair! They will definitely make a lot of memories with each other.

Some Mothers Get Babies With Something More

To all the mothers who got something more. . .

Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She
smiles demurely, shakes her head and gives the answer mothers have given
throughout the ages of time. She says it doesn't matter whether it's a boy or a
girl. She just wants it to have ten fingers and ten toes. Of course, that's what
she says. That's what mothers have always said. Mothers lie. Truth be told,
every mother wants a whole lot more. Every mother wants a perfectly healthy
baby with a round head, rosebud lips, button nose, beautiful eyes and satin
skin. Every mother wants a baby so gorgeous that people will pity the Gerber
baby for being flat-out ugly. Every mother wants a baby that will roll over,
sit up and take those first steps right on schedule (according to the baby
development chart on page 57, column two). Every mother wants a baby that can
see, hear, run, jump and fire neurons by the billions. She wants a kid that can
smack the ball out of the park and do toe points that are the envy of the entire
ballet class. Call it greed if you want, but we mothers want what we want. Some
mothers get babies with something more. Some mothers get babies with conditions
they can't pronounce, a spine that didn't fuse, a missing chromosome or a
palette that didn't close. Most of those mothers can remember the time, the
place, the shoes they were wearing and the color of the walls in the
small,suffocating room where the doctor uttered the words that took their
breath away. It felt like recess in the fourth grade when you didn't see the
kick ball coming and it knocked the wind clean out of you. Some mothers leave
the hospital with a healthy bundle, then, months, even years later, take him in
for a routine visit, or schedule her for a well check, and crash head first into
a brick wall as they bear the brunt of devastating news. It can't be possible!
That doesn't run in our family. Can this really be happening in our lifetime? I
am a woman who watches the Olympics for the sheer thrill of seeing finely
sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles with nary an ounce of flab
or fat, virtual powerhouses of strength with lungs and limbs working in perfect
harmony. Then the athlete walks over to a tote bag, rustles through the contents
and pulls out an inhaler. As I've told my own kids, be it on the way to physical
therapy after a third knee surgery, or on a trip home from an echo cardiogram,
there's no such thing as a perfect body. Everybody will bear something at some
time or another. Maybe the affliction will be apparent to curious eyes, or
maybe it will be unseen, quietly treated with trips to the doctor, medication
or surgery. The health problems our children have experienced have been minimal
and manageable, so I watch with keen interest and great admiration the mothers
of children with serious disabilities, and wonder how they do it. Frankly,
sometimes you mothers scare me. How you lift that child in and out of a
wheelchair 20 times a day. How you monitor tests, track medications, regulate
diet and serve as the gatekeeper to a hundred specialists yammering in your
ear. I wonder how you endure the clichés and the platitudes, well-intentioned
souls explaining how God is at work when you've occasionally questioned if God
is on strike. I even wonder how you endure schmaltzy pieces like this one -
saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up
and down in the motherhood line yelling, "Choose me, God! Choose me! I've got
what it takes." You're a woman who doesn't have time to step back and put
things in perspective, so, please, let me do it for you. From where I sit,
you're way ahead of the pack. You've developed the strength of a draft horse
while holding onto the delicacy of a daffodil. You have a heart that melts like
chocolate in a glove box in July, carefully counter-balanced against the
stubbornness of an Ozark mule. You can be warm and tender one minute, and when
circumstances require intense and aggressive the next. You are the mother,
advocate and protector of a child with a disability. You're a neighbor, a
friend, a stranger I pass at the mall. You're the woman I sit next to at
church, my cousin and my sister-in-law. You're a woman who wanted ten fingers
and ten toes, and got something more. You're a wonder.

Living on the Edge

That is what Max has been doing the last couple of days!! He is usually really cautious with ever thing he does. It started with him not wanting to sit in his bouncy chair for his g-tube feeds anymore. We buckle him in to his chair and he has managed to find a way to wiggle out and stand in his chair for his feedings. I don't know what I am going to do for his feeds if he won't sit in his bouncy seat and you can't hold the wiggle worm. I guess there is always his jump-a-roo!!



Over the last couple months Max has started taking a couple steps to us with a lot of coaxing. We usually set him up against a chair and sit a couple feet away from him and say "come here Max" and after a giggle session, he we take a couple steps. The other day after he took his steps towards me, he turned around and walked back to the chair. I was in shock! I also witnessed him standing at the chair in our living room and taking a couple steps to the end table. Today at day-care, he had his first walking injury that left a goose egg on his forehead. He was standing next to a rocking chair and walked about three feet to his jump-a-roo. And then he attempted to walk back to the chair and took a fall in to the rocking chair. I am so proud of the little guy for having the confidence to take steps when no one is there to catch him!!

Check out his first walking injury. . .

New Ball

John and Max hit the mall on Wednesday and got Ava an new pink and gray basketball. Ava and John like to "shoot some hoops" together in the evening. She was pretty excited about her new basketball. Here is a video of her on her first day with her new ball.

Sunday Brewer Game

Last Sunday, John and I left the kids with Papa and Grandma Janice and headed to Milwaukee for a Brewer game. Before the game we met up with my mom, her new husband Gary, and Gary's kids for a BBQ before the game.



At the game we met up with John's sister, Dee, and her husband, Ryan. It was a great day to be at the ball park. The Brewers won in extra innings. . . and I got some sun!!

Flowers From Ava

Ava and Max spent the day Saturday with Papa and Grandma Janice. Janice took Ava to the farmers market and they picked out this beautiful bouquet of flowers for me. Ava was so cute when she gave them to me. Thank you Ava and Janice!

Babble

Look what Max started doing. . .

I couldn't believe my ears!! Ava started yelling "Max said his first word." It was too cute!!

Swallow Study

This week Max had a swallow study with the speech therapist he sees when he goes to the hospital. His swallow study consists of going to radiology with a speech therapist and having Max eat and drink food/milk mixed with barium and an x-ray is taken of him swallowing. The barium makes the food show up on the x-ray. At his last study about six months ago, he was still aspirating on thin liquids (milk, water, etc.), but did fine with pureed consistency foods. At this study, he did not aspirate on thin liquids when we gave him about a half a teaspoon. But when we gave him a teaspoon, he would aspirate a little bit. But, this is still huge news for Max!! Any sign of improvement is huge news for Max!! His swallow with purees even looked better. He was swallowing much quicker than he did at his last study. Our plan is to give Max milk using a baby spoon with each meal and if he remains healthy we will repeat the swallow study in three to four months to see if we can move to a teaspoon at a time (or more). A swallow study is something Max does not enjoy doing. He hates radiology! So as soon as we walk in the room he becomes fussy, which makes the study a little more challenging. It is not like feeding him at home.

I was really happy when we left the appointment! And his first feeding of milk at home went great. He really enjoyed the milk, which I was worried that he wouldn't like.