Tuesday, August 26, 2014

Physical therapy.

For the last few weeks, Marcy has been receiving regular physical therapy. We have a great physical therapist, that has many years of experience. Her full time job is to work at at EDECRI, a place for only children and adults with special needs. We are blessed to have her in our area. She even comes by the house!
Tiny baby on a big blue ball!
 Learning the crawling position.
Sitting all by herself!!!!! Today she sat like this for at least a minute without any help! I was so proud of her. Physical therapy helps! 

We are paying about $20. a week for this service. If anyone would like to help out with this cost, please click on the donate button at the top of this blog, and let me know via e-mail that you would like it to go to her therapy. Thanks!

Thursday, August 14, 2014

Hurry up and wait.

I thought I would describe to you one of our recent appointments in the City. Not all of them were this bad, but they were still bad in terms of having to waiting forever. Forever, I tell you. I will warn you, this is a long story and it will take you a little while to read it. But please trust me, not nearly as long as this whole insane process took!

I wanted to get Marcy's hearing checked. She has malformations in both ears, and though I know that she hears, I wanted to confirm what level, and if both ears could hear. I called the hospital for the blind and deaf that does these tests and asked for an appointment, but they said you have to just show up and get a number. This is common here. You get a number, then are served in order of your arrival.

We were told they give out numbers from 6-7:30 a.m. We arrived at 5:40 and were given number 22. So we sat down and waited. Then we were called by number to a desk. As I was walking to line up another gentleman handed me an extra number he had. Number 12! Yay! Skipped half the line!  What I didn't know was that this was only the first of many. When I got to the desk, I told her the age of the baby, and that we wanted a hearing screen. She gave us a piece of paper and told us to go pay. So we went to that line up to pay. The guard saw me with a baby and told me I could sit down and he would let me know when it was my turn. After I paid (a minimal fee), I had to wait in another line. This one went a little slower. She entered Marcy's information and told me to go to the next line. In that line, I was called to the front by the guy. I figured it was a baby perk (often at banks you get moved to the front of the line if you have a baby-especially if that baby is crying!). He asked if I had gotten it all sorted, and I said yes. Then another lady at least half a foot shorter than me, Guatemalan, and about 50 years old came and stood beside me. He looked at her and said, "oh, I thought you were her." Really?!? That was the first time I had been mistaken for another Guatemalan. So I was flattered. But a 50 year old? Really?!? Oh well, it got me to the front of that line. ;) And I actually still don't know what that guy did with my information.

Then we had to go see another lady. She took my card with Marcy's info and asked me to wait outside that room, and she would take me to the next place. So I stood outside, foolishly thinking she was coming right away to help me. Nope. The same guard from the bank line up finally came over and told me I could sit down, she would be a while. What a nice guy! So I went and sat down and waited. While I was sitting there, a kid came running around a corner and ran into a blind guy's walking stick, but thankfully not enough to knock it out of his hands. Then a second later the kids dad comes tearing around the corner and without hesitating hurdle jumps the stick! The blind guy didn't even hesitate in his step, and I know he had to have heard the guy jumping right in front of him. I was amazed. He must just be used to people not taking care around him.

Lady finally comes, and takes us and few others to another area waiting room. I foolishly thought (there were a lot of foolish thoughts that happened that day) we were waiting for the hearing test. A lady called me into her office. I thought she might be the dr. Nope. She asked what she was here for. I told her I wanted a hearing test. She said we would have to see the dr. There were only 4 other people in the waiting room, so I figured (you guessed it, foolishly) that it wouldn't be that long of a wait. I found out later that lady was the social worker. I don't know why she wanted to see us first.

So I waited. Then we were told to go around the corner into a different waiting room. This one was packed!!! At least 60-70 people. And I had no idea where I was in the line up. A lot of time went by. People were called, and left, and we were still there. Then,  there were about 12-15 of us that hadn't been called, and it seemed like no one else had been called for a while. Another dad finally asked the nurse at the desk, and we found out that the pediatric dr had been called to an emergency surgery as some kid had shoved something into his ear. So we waited. And watched this movie on youtube. One of my favourites from my childhood!
While we were waiting, I noticed a nurse walking with a blind guy and his guide dog. Dog was on the left, and nurse on his right, leading him down the hall. She needed something that was on the desk to the left of the guy. So nurse figures she'll just jump in front of him quickly while she grabs her stuff. Problem was, guy had her elbow, and dog was in the way. So she kneed the dog in the head, and pulled blind guy over with her. It was really awkward. So she realizes she needs to disengage from the guy for a minute. That worked much better. He went to sit down. I said good morning to him as I passed by going to the bathroom. Dog was sprawled out in front of him, almost completely blocking the hallway. I thought that was strange as from what I've seen, guide dogs sit under the chair of their owner. But I thought he was big, and didn't fit under there.

Later on, the nurse was going to take blind guy somewhere so the guy gave the command "follow" to his dog. Nurse stopped at the desk and I guess the dog didn't feel like it. So the dog headed for the chairs and started taking the guy on a tour of us sitting waiting. Again, nurse doesn't say, "oh, I've stopped". I really though this being a hospital specifically for blind and deaf people, that the staff would have a little more education, but... no. At this point, I've figured out this dog couldn't care less about his job. His commands were in English, so I know he was trained in North America, but the guy hadn't kept up with his training I guess. The dog would sit on his feet if he was talking to someone. He would try and visit with everyone and pull blind guy along with him. It was almost funny. Until I got close to him with Marcy. We were beside him at the desk, and the dog leaned forward as he wanted to sniff Marcy. I told the guy that I had a baby in my arms, and that is why the dog was headed for me. The guy started to respond, saying something about the dog and kids, but I couldn't hear because all of a sudden the dog barked at Marcy and lunged for her!!!! If that had been my dog, what a beating he would have gotten! I was so shocked and mad. I don't think the dog would have bitten her, but why else was he barking and lunging at her! We steered very clear of them after that!

Finally the dr. comes. We go in, he looks in her ears, tells me her ear canals are open, and says she has to be sedated to do the test. And we have to get labs before we come back. We were in there about 2 minutes.

We went back to the social worker, and she explained the surgery, and the cost. She told us Marcy had to not eat before she came in for the sedation. I asked how long (figuring it was 4-6 hours or somewhere in there), and she said she didn't know. So she called the nurse and the nurse didn't know. So the social worker told me to go to my pediatrician and she would weigh and measure her and then tell us how long she had to go without eating. Seriously. If you don't know, just tell me that! Not some weird story about her height and weight.

Then we could finally leave. It was now after 11:00. It was a really long day. And we didn't even accomplish anything, since I don't intend to sedate her for the test! And we hand't eaten breakfast because it was too early in the morning before we went, and I really didn't think we'd be there half the day! So we went for a nice big pizza for lunch!

Oh well. What can I say, it was a good cultural experience?!?

Tuesday, August 12, 2014

Cute Marcy update.

We got back a week and a half ago from a four day trip to the Capital City, for five medical appointments for Marcy. I was really excited to see how much she weighs, and was counting on 10 1/2 pounds. She weighed 11 pounds 14 ounces!!!!!! What a superstar! Normally we weigh her without clothes, and this time they weighed her with clothes, so technically she is less than that, but not by much! I am so thankful. I feel like she is at a place now that I don't have to worry about her weight gain every day.

Our meeting with the cardiologist was first on the list. As soon as I walked in the hospital, I had what I assume was a panic attack. I couldn't believe it! I was nauseated, increased heart rate, felt like I was breathing with a big heavy rock on my chest, and a general sense on uneasiness. I know that it was a rough time spending those 5 1/2 weeks with her, but I sure didn't expect that! We ended up spending so much time waiting for the appointment that I was fine by the time we went in.

Unfortunately, she has another hole in her heart. Apparently it has always been there. But they didn't tell me about it until now. Don't ask me how I feel about that. This means possibly another surgery. Again, don't ask me how I feel about that. So please be praying for this hole to close. We go back at the end of October to check on it.

Nutrition was so happy to see how well she has fattened up that they took a picture of her! A lot of people stopped us int he hallway of the heart hospital to see how well Marcela was doing. The cleaning staff, support staff, pharmacist, nurses and dr's. It was like we were rock stars! ;) And I was so proud to show off how well she has been doing. We visited the head of the ICU and he donated a bunch of formula for her. Her main doctor was so happy to see her! It was nice to see them on a happy note.

We went to get a hearing test for her. I thought. Ended up waiting 5 1/2 hours to see a dr who said get these labs done and come back. I know that she hears, but because of the shape of her ears, there is a possibility that she will have some hearing loss. But she needs to be sedated for the test and I am not ready to put her through that. In other words, I'm too scared to sedate her. So that was a waste of a morning. I'll probably write about that adventure in another blog. ;)

We saw the nephrologist and she said her kidneys look good for now. Yay! We go back in three months for another check up.

We saw a geneticist to confirm her syndrome. He hasn't got back to me yet, but it will be good to know for sure what she has.
 This didn't happen as much as I would have liked. It is hard to not be at home, and be off your schedule.
Cute as she is, she was supposed to be sleeping! 
 We were THRILLED to be home! It was a long four days, and she did really well. Until we were getting ready to head home. It was a bit of a rough ride, and we didn't get in until after 8:30 at night.
Just hanging out. Is this one of the most cutest faces you have ever seen? And I get to hug and smooch on her every day!!!!!

Please be praying for the hole in her heart to close, and pray for her feeding. She is still using the feeding tube for about 2/3 of her feeds, but we are seeing definite improvement, praise God!