Getting back from a jog

Time to start running again, I think we gave a long enough break from the Trolley Run. Luckily the dogs and Bella really enjoy our daily runs. As long as Bella has her sunglasses on, she is pretty content to be out and about for sometimes up to 2 hours.

Trolley Run

Jesse and I participated in the trolley run on Sunday. It rained most of Saturday and all night. It was still raining that morning. Jesse was already at the start line when this picture was taken. He was in the competitive first wave. I was in the "I run, but not quickly" third wave.

Check out the circa 1994 yellow rain jacket. That's right, I got that when I was a freshman in high school. Jesse and I were commenting how neither of us really had a rain jacket we could wear when running. Maybe it's something we should look into purchasing so we (okay just I) don't end up looking like a dork. Oh and it technically stopped raining right before the race, so I didn't need it anyways.After the race we ate with friends at Reverse on the Plaza. The race is 4 miles long and ends with a bash at the Plaza. 10,000 runners participated this year. I was happy to report I ran 3.5 miles and only walked 0.5 miles. Jesse was on pace to finish in 28 minutes, and then with only half a mile to go, he felt something pinch in his leg, and was unable to run. So he gimped to the end feeling very old.

I'm now trying to debate if I should do the Hospital Hill run the first weekend in June. It's supposed to be a horrible run, in fact competitive runners even have to walk this course. I thought about signing up and just walking the whole thing. It benefits Johnson County Infant and Toddlers, which is a program that has been providing Bella with home therapists since she was born. Okay I think I have just convinced myself that I should do it. It surely can't hurt anything!

New buffet

When I finished painting the kitchen a few months ago, I said I would be replacing the black buffet with a new one.I found this on Craigslist for $50.
After a couple coats of paint, some new stain and varnish on top, and new hardware, it now looks like this.
I also received this old antique tea cart from my mom. I thought it would be a great piece to grow herbs in the kitchen. I found some contact paper that almost exactly matched the new curtains.
Now the seating area of the kitchen looks like this.
I really have a desire to paint the kitchen chairs bright green to pull in the color from the family room. I saw it done in a magazine and it looked great. But this table and chairs is also an antique and I'm not sure if I can commit to painting. We'll see..........I do still have some green paint left!

Look what I can do!

What happens when Bella has control of her own marker...........apparently it's used as makeup and tastes good enough to eat!

Bella doesn't like to hold things in her hands for very long. I think it's a combination of her weak muscles and sensory issues. Today at preschool they decided to use tape (similar to athletic tape) to help her hold on to items.

They started with a spoon, to see if she would bring it to her mouth during snack time. Next was art time. They taped a marker to her hand and let her have free reign. Some lines and dots did appear on the paper, but it also went on her face, in her mouth, on the therapists arm, the table, etc, etc. She didn't seem bothered by the tape at all, so I think we might have to start using a version of it at home. Although I think I feel safer trying the spoon activity, and I'll leave the marker time to school!

Cleft Palate Clinic

Before I start talking about our morning adventure, I thought I would share this picture.

Let's see, we put the sheet down on the carpet so that Bella can roll around and not get dog hair all over her. Except the dogs love to lay on anything soft, so blanket, sheet, bathmat, clothing, you name it and it's theirs to lay on. Kind of defeats the purpose.
As most of you know, Bella was born with a cleft palate. We had it repaired December of 2008 when she was a little over a year old. And I believe we are supposed to continue to see the cleft palate clinic (at Children's Mercy) yearly until she is around 5 years old.

I had been dreading this appointment all week. The clinic usually takes around 4 or 5 hours long, and anyone who has had to wait around a doctors office with kids will know, that is an excruciating long period of time to keep them happy. Not to mention that this year I would be tackling the visit on my own. And to top it off, in normal Bella fashion, she was up at 4:45am this morning, so we were a little tired and crabby.

I shouldn't complain too much, she actually behaved herself quite well. She just got tired of sitting in her chair, and I needed to let her roll around for a little while.

Here's what we learned today (or already knew but more clearly defined):

Plastic Surgeon reported that her cleft repair looks good, and he doesn't need to see her again until she is 4 years old. We would only need to do a repeat surgery if her talking is nasally. And we won't know that for years.

Occupational Therapist reported that we are doing great things for Bella taking her to Children's TLC and continuing to see our home therapists weekly. They knew we had done a swallow study on Bella (That's a whole other issue I haven't even discussed on this blog yet), and acknowledged that even though they gave us the recommendation that she should be tube feed only (nothing given by mouth), she thought at the time it was the safest recommendation and understood that it most likely wasn't necessary and that maybe we should think about repeating the study. But for now we should continue to work on drinking through a straw, and getting her to chew.

Nutritionist reported that her weight of 26.4 pounds puts her at the 15%-20% mark, and with this progress they are officially not worried about her weight gain. Which also helps in proving that she eats orally just fine and is able to take in her calories. She is also such a great eater and has no problem eating from all the different food groups, now if only mom and dad would follow her example!

The Audiologist performed a hearing test, and even though we couldn't get any clear results (you have to be able to hold your head up and look in different directions as you hear things in order to pass the test), I can tell you that Bella did a hundred times better than last year. Last year she just hung her head and didn't respond to anything. This time she would pick her head up and actually turned when the ladies voice came from the side calling her name. If it was just an object making noise she did not turn. I would imagine that was because she didn't care what the noise was, and didn't want to make the huge effort to pick up and turn her head. So again if we want to get a clear picture of her hearing we have to do a brainwave test that must be done under sedation. But I am not really worried about her hearing.

The ENT (ear doctor) informed us that she still has fluid (infection) in her ears. We just can't seem to get rid of it. They are going to take another culture to see what bacteria it is, and see if we need to do a 2 week oral and ear drop antibiotic regimen to get rid of it. We are also going to go back in 2 weeks to keep our eyes on it, and make sure it is really clearing up. We also are going back to putting cotton balls in her ears when she bathes so that she won't get any liquid in her ears. And if the infection doesn't clear up in the next month, we may be scheduling a surgery to get new ear tubes put in. They now have tubes that have a new antibacterial lining on them, so that she tubes themselves can't hold on to infection.

The speech pathologist did a language and perception test (consisting of asking me different questions). We know this is Bella's lowest ability and she showed perception (knowledge based) as a 2 month old and expression (talking) as a 4 month old. The speech pathologist did say that based on the different stories I told her, she would more accurately guess that Bella is in the 6 month range for expression and perception. So we need to continue to work with the speech therapists so that Bella and the world (or even just mom and dad) can find a way to communicate with each other.

And that was the cleft palate clinic. A lot of waiting around and moving to different buildings, rooms, etc to see all the different specialists. So I guess we will be back when Bella turns 4.

Working outside all weekend long

This weekend we had many goals. We got one done, which was to modify the bike cart we had bought for Bella well over a year ago, which she is unable to ride in because it doesn't support her enough. We were able to add a plastic seat in it, which allows for more stability. We had plans to take a family bike ride together, but our yard had other plans for us.

We started to trim the trees in our yard. In our 1.5 acre yard full of trees. Jesse used a chain saw, and pole saw to cut away at the overgrowth. And I used a wagon to pull the branches to the curb (which was uphill). Jesse got to pull the extremely large branches, which were too big for the wagon. Here is a picture of Colby posing in front of the cut limbs.
The pile only includes the trees trimmed from the back yard and one side. We still have 4 very large oak trees in the front yard, that look like the one below. And some additional maple trees on our other side to trim yet.
And we have to get it all finished up by this Friday morning at 8 am, when the city comes to pick all of the limbs up. That or, we can have enough firewood for years to come in our fire pit.

A new adventure

Bella and I ran errands this morning. It was raining outside, so I didn't want to take the time to unload her stroller and put her in it. So instead I just grabbed her and we ran inside. I wondered how well she could support herself in a store cart. I was actually quite impressed with her. I had to keep my hands on her the whole time to stabilize her, but she sat up quite well. When I needed to grab something she would lean her head back over the metal, I guessing that wasn't too comfortable. So I need to come up with some type of pillow that I can bring along with us, so she can ride in the cart. It will really help when we got to the grocery store, so I don't have to try and push a cart, and pull her in a stroller.

My New Hat

Bella loves being outside, but still refuses to open her eyes or even hold her head up. So I made her this new hat. That's right I actually made it. Not too shabby for my first sewing adventure. I don't plan to make a lot of things, it just takes too much time. It's nice to make some custom things when needed. So hopefully between the hat and sunglasses, we can be more comfortable outside. Outside pictures to follow..........

It's Just a Typical Night

Just like almost every night for the past couple of months, Bella woke up at 2am. And like half the time, she decided not to go back to sleep. Now it's the middle of the day, and Bella doesn't really want to do anything, but lay on her blanket. I'm hoping she will just fall asleep soon, but so far no luck.

I don't know why she wakes up so much. I really do think it's a different reason each time, it can be ear aches, teething, pooping, peeing the bed, wanting a drink of water, or just because it's routine.

Her therapist are talking about getting her in for a sleep study. I'm not totally against the idea, but I have feeling it isn't going to provide the answer or a full night's sleep that we are looking for.

So for now, most of the times we get up during the night with her, and occasionally we make her cry it out. But unfortunately you never can tell if her waking up is for a real reason or not, without checking on her.

Kitchen Buffet

I have a new project. I bought this buffet table for $50 on craigslist. I plan to refinish it and put it in the kitchen.

Happy Easter

We actually all made it to church for Easter for the first time since Bella was born. I quickly ran out and bought Bella an Easter dress on Saturday night, and even though she didn't sleep very well that night (she was up a total of 4 times that night), this very tired family made it to church.

The sick household

Bella gets to type on her computer while mom works on hers.
We seem to be the house of sickness lately. Bella has been fighting an ear infection since I can't remember when. We tried antibiotic drops, oral antibiotics, went in and got the ears suctioned out and tried new drops, and just when we were done I noticed an infection in her ear again.

On the other hand, I thought I was getting sick last week, but it didn't actually fully hit me until Monday night. Of course this is the week that it's been beautiful outside and I'm sick and can't do anything....I know poor me. Jesse has been working until 9 or 10pm all week, so Bella has been stuck with sick mom.

And this morning I noticed a little congestion in her throat. So I'm going to say that she is now getting sick. But then it is Easter weekend coming up, and the past two years she has been really sick for Easter. In fact she has never even worn an Easter dress, so this year I decided to not buy one, in the hopes that I would have to run out last minute and get one since we would make it to church. But if we continue on the path we are going, it looks like not buying a dress was a good decision.