Posted (Tina) in All Posts on December-30-2009

Yep, the curls needed some lift. So the scissors came out and boy did the curls bounce back! It is tough to cut her hair because she doesn’t like it, squirms, screams and turns blue. But the results are not too bad considering that I am not a professional and I could only tolerate a few minutes!

Posted (Tina) in All Posts on December-28-2009

We finally took the time to create a new play space for Ella. We’ve been trying to get her to explore outside of her Pack-n-Play, but she never seems to like it as much. Having videos handy is the key. So, we found an old TV in the basement along with an old notebook computer. After Josh worked his magic, we just select which movie of Ella’s to play and it appears on the TV. Once complete, we placed a comfy blanket on the carpet to create a softer, defined space for her to explore. She LOVES it. We’re excited because this is another big step for Ella. From this point forward, we will try and use the Pack-n-Play less and less.

Lola likes being close and decided to hang out with Ella in her new play space. So cute…

Posted (Tina) in All Posts on December-26-2009

We’ve been trying the combo of Prevacid and Nasonex to see if that will help with Ella’s secretion challenges. So far, it hasn’t. I’m bummed. Nasonex takes up to 2 weeks to reach its maximum effectiveness when taken each day. So, we still have another week to see what happens. Last time, we didn’t notice a change until around that time, although she also got a real bad cough too. So, the doctor wanted us to try Nasonex again in combination with the Prevacid. We’re hoping the Prevacid will block the reflux and that the acids from her tummy will not have a chance to travel up her throat and cause a cough.

It does seem like Ella has been running dry these days. The upside is that her saturations seem good and her heart rate is lower overall. She tolerates more things, like occupational and physical therapy. When she feels better, she is in a great mood. The downside is that she gets really thirsty. It got to the point where she was waking up several times per night and many times wanting water via the syringe. So her sleep has not been the best. She seems to be waking up a lot each night. Last night, it was only 2 times, but Christmas Eve into Christmas Day, she was up 10 times! To try to see if we can balance her out, we have been skipping her night time dose of diuretic. We will see if this helps this week too. Mom hopes so…I like my shut-eye.

Aside from that, Ella is definitely gaining weight. For her, this is a good thing. Gaining weight and getting bigger is what is going to help her lungs grow. I just weighed her and she was 14.25 kg or 31.4 lbs! She was just 27.5 lbs at the beginning of October. Yikes! And with the weight gain, she is fluctuating between a size 3T-4T. I can’t believe it. Again, this is great except for the fact that she cannot crawl or walk, so my back is feeling it for sure! The hardest is lifting her in and out of her Pack-n-Play (which sits on the floor). She is getting stronger and moving closer to mobility. However, with her weight gain the past few months, we’re not sure that her muscle strength has kept the same pace. So in some ways, we think the weight gain might be slowing down her mobility goals. She still seems like she is 6 mos-1 year away from any type of independent mobility.

Here she is enjoying her new turtle from Christmas. Over time, we’re hoping to convince her to sit down, hold on and try out the wheels on her own!

Posted (Tina) in All Posts on December-25-2009

Posted (Tina) in All Posts on December-20-2009

It was nice weather for Denver, so we decided to take a stroll in a favorite neighborhood. Ella had a great time and looked oh so cute sporting her ponytails.

Posted (Tina) in All Posts on December-19-2009

Posted (Tina) in All Posts on December-16-2009

Yep, even though it is not an enjoyable activity, we still try foods here and there. The OT asked us to stick with whipped cream for now. The faces that Ella makes are unbelievable! You would think it tasted really bad…this just shows you how an oral aversion really can taint your experience with food. We’ll keep trying!

Ella received her H1N1 booster shot last Friday. So glad that we were able to get her vaccinated. Also, she visited the ENT for a follow-up appointment. The ENT prescribed Prevacid twice per day. Dr. Kelley noted that since Ella got a cough with the daily Nasonex treatment, it is likely that stomach acids might have played a role. While Ella is laying flat sleeping, the Nasonex was greatly helping to drain her sinuses. However sometimes the stomach acids can also travel up and irritate the esophagus and larynx, even though she has a nissen (the nissen is there to prevent food from refluxing and to make sure Ella gets nourishment. However, the nissen doesn’t tie off the esophagus and stomach opening 100%, otherwise she would not even be able to swallow her secretions). Since Ella had this reaction to the Nasonex, this is the most likely cause.

The ENT asked us to give Nasonex every other day for 1 week, then switch to administering Nasonex every day too. We started last Friday and we’re just about ready to give Nasonex each day starting this Friday. We’re hoping that makes the difference because so far, things have not improved for Ella. She still struggles each day, especially in the morning hours, with secretions and mucoids so thick that they occlude her airway. We have another follow-up appointment in January to see if this has worked or if we need to try something else.

The other day, we just captured a family moment. Ella wanted to play with her computer and Lola wanted to be close and watch.

I had a great birthday yesterday, hanging out with Josh and Ella. Below you can see the snuggles I rec’d from my girl.

Enjoying the holiday season and looking forward to celebrating Christmas in 9 days!

Posted (Tina) in All Posts on December-1-2009

Well, we are still full from Thanksgiving. The leftovers are tapering off and we’re still trying to work through all the pies I baked.

And now, Josh has been fighting a cold over the past few days. Ella’s cough did go away over the course of 5 days, once we discontinued using the Nasonex. Without it, I think she has slept better at night too. Although now, we are back to baseline which is very thick secretions and mucoids thorughout the day. In other words, her sinuses don’t drain and drip as they should and the secretions are extra thick causing an occluded airway at times. So, I called the ENT back today for some direction. We are going to try giving the Nasonex every other day until we have a follow-up appointment on Dec 11th. Hopefully, that will be just the right amount and/or the ENT might have another medicine that we can try. That day should be fun because we also have to go to the pediatrician to get the 2nd booster shot of H1N1 for Ella. We’re thankful that she is able to be vaccinated. She definitely would not do well with the flu (she can’t even vomit, so would that just present as constant retching with a fever?)! We’re hoping that we do not have to find out. So far, so good.

Ella was in a great mood this morning and did amazing during her OT session. I’ve been working on getting her to sit in her high chair more often. Then, I pulled out the beads and tried to get her interested. It has taken a long time, but she decided that she was ready to touch them and play with them. So, below are some pictures from the last couple of weeks in the chair. Besides beads, Ella also likes to catch up on her fashion and beauty tips in magazines.

The OT session this morning started with beads, then we added soap suds. She still touched the beads and played with them which is huge. After that, we placed the beads in a bowl of water. After some coaxing, she started to touch the water and then try to get the beads with her hands. We were having such good luck, we kept pushing the boundary. So, we went and put whipped cream on the tray and let her test that out too. It was great because we simply followed her lead and tried it out. She was still calling the shots, but for whatever reason, she was in a great mood and seemed more tolerant. Along with letting us put things on the tray, she was exploring with her hands more. When she was touching the water and then the whipped cream, she even put her hands in her mouth a few times. You can see in the photos that she was not expecting a taste. Her expressions were classic!

And yes, Lola has decided that she is part of this family and quite comfortable in her role as canine in the West Family. It’s been challenging at times with a puppy, but it’s also been fun too!