Family Fun Time

This last weekend Marissa got a real treat. She had a visit from her Bubby and Zayda ( Yiddish for Grandma and Grandpa). My dad and step-mom came out from Montrose. They had not seen Marissa for about a year and boy has she changed!! She went through her normal "stranger danger" but soon warmed up to them. Let me clarify... when I say "warmed up to them" I mean as long as either Jeremy or I were always in the room and Bubby and Zayda stayed at least five feet away from her. Then she was all smiles and waving and blowing kisses. She did allow Bubby to hold her and dance with her for some time and they played for an hour while Marissa was being fed on Sunday. Unfortunately for my dad Marissa never got comfortable enough with him for physical contact. :( I can tell she loves him just the same though!

On Saturday my step-mom treated me to an afternoon in Cripple Creek. Jeremy was on call so he stayed home with my dad and Marissa (dad doesn't really get a kick out of gambling). Michelle and her boyfriend Nate went with us and we had a lot of fun. Lost money of course, but if you are going gambling with the intent of winning, you shouldn't be going in the first place! It was good clean adult fun, and it was nice to get away, even for the afternoon. Thanks Arleen! The rest of the weekend was spent lounging around and relaxing with family. Sometimes those are the best times!

Marissa says "enough with all the picture taking already!!!"

Fun in Cripple Creek
Sisters
Fun time in the car!
Way to keep your eyes on the road Arnie!
Look how excited we are!!

Update on sickies

I know we haven't updated (sorry Misti!!) Marissa is a lot better. No fever and more energy. She did need a little O2 for a couple of nights to keep her sats normal, but she hasn't needed it for the last couple of nights. She developed a little wheeze at the end of her cough, so we are treating her with a nebulizer and she is sounding much better. That's the good news.

The bad: The trach culture came back positive for a bacteria called pseudomonas. This bacteria is very common in trach kids and is very hard to treat. We think she is colonized with it because it is not what she is sick with right now. It can very easily turn into pneumonia, so it needs to be treated quickly if it is in its active state. Unfortunately Marissa's pseudomonas is sensitive to only two kinds of antibiotics. The first is IV administered over a period of 7 days. Obviously this would require hospitalization. It would be a shame for her to be hospitalized for the sole reason of giving her meds! The other kind is inhaled through a nebulizer. Problem with this one is it comes at a price of ... $4,000!!! Our insurance company said that it is above our price limit on our plan and for them to pay for it, they have to go through an override process which could take up to 48 hours!! Can everyone say catch 22?!?
Because this is something that is likely going to make her sick in the future, her doc is trying to get a pre-auth for this med so in the future we don't have to either hospitalize her or wait two days for the med. Aaaaggghhh!! Hopefully the insurance company will be reasonable (Oxymoron!?!) and realize that hospitalization for a week would be much more expensive than $4000 for 2 weeks of meds. We'll see!!!

On a different note Marissa likes to play the Yawnie game. I dare you to watch and not get sleepy!!

A case of "The Mondays"

It has been a really difficult, long day and it's only 2:30!

It actually started Saturday evening with Marissa starting to come down with something. She became lethargic and was running a low-grade fever. We put her to bed and prayed for the best. In the past when this has happened, it is always followed by low O2 sats, yellow secretions and then pneumonia. We were very encouraged that her sats and secretions stayed normal through the night. Her fever got worse, however, and her heart rate went up significantly. All day Sunday we watched her very carefully. Her fever got high enough a couple of times that we considered taking her to urgent care, but then she would bounce right back. It was a long night because the pulse-ox alarm kept going off. Marissa's feet were chilly, even though we put socks on her, and the pulse-ox had a hard time reading correctly.

We had an appointment already scheduled for 7:30 this morning to pick up the braces for her legs. They actually told us to come in before they were technically open, so I knew I was not going to expose any other kiddos to Marissa's junk. I decided not to cancel, as it would be the end of the week before we got another appointment and the fact that it was going to be so quick. We got back to the house just in time for me to call her pediatrician when his office opened. We got an appointment for 9:45. With only 45 minutes before we needed to leave again, I grabbed a quick bite and only one cup of coffee! We saw the doc and she still had a fever and was very cranky (she always is when in a doc's office!) He said he thought she had a viral infection and we needed to get blood drawn and trach culture. He also wanted to rule out pneumonia so he ordered a chest x-ray. So back to the same place we were for our early morning appointment!

We got to the medical plaza, she had her x-ray, and then we went across the hall to the lab. I guess I'm still a rookie at this kind of thing because, I was told to get the trach culture, we would have to go to the hospital (just down the street). It needed to be done by a respiratory therapist. They looked at me like I should have known that already! What nerve!! We have been extremely lucky Marissa has not been sick often, so I had no idea how it worked. Then they attempted to get her blood drawn. What a nightmare!! They stuck her 3 times and got nothing and said since we were already going to the hospital, we could try again there. Great, thanks for stabbing my daughter!! We wasted 45 minutes there and then went to the hospital. They got the trach culture with no problem.

I guess I hadn't woken up yet because the nightmare continued. They stuck her three more times and only got enough blood for the CBC. After 45 more minutes and Marissa going ballistic because she was sick, tired and stabbed 6 times, they told us we'd need to come back in two days to get the blood culture. HAH!! I told them I would call her doc. Apparently, the CBC will tell if she has an infection, so I'm not sure why they tortured her for a blood culture. I was told it was because she had a fever of unknown origin. Her doc is also very angry with the labs because he said he should have been called after two failed attempts.

We finally got home and she is fed and resting comfortably. I just got a call from her doc saying no pneumonia (YAY!!!) but her blood work tested positive for some sort of infection so we will have to go back and see him tomorrow (BOO!!!). And to top it all off, I got a speeding ticket this morning!! Just not our day!!

At least we are home with no pneumonia and the children's Motrin I gave Marissa seems to have taken her fever away and made her comfy. Please pray for Marissa to get better very soon and for a restful night for all of us!!

P.S. Please enjoy the following video clip from one of our favorite movies, "Office Space". :)

Get that camera out of my face!!

This is what happens when you get a camera too close to our baby's face.

Disclaimer: No cameras were harmed during the filming of this video

Once again, I apologize for the bad quality of the video. It's alot brighter on our computer than on Blogger but you get the point.

Quick update

We went to Marissa's ENT appointment yesterday and found out she passed her salivagram with flying colors!! No aspirating on her saliva. Yay!! Her doc wants her to have another swallow study, so we are in the process of scheduling that. And then, of course, we are looking forward to her ear tubes and bronch on the 8th of August. There is no end to procedures and tests for this poor kiddo!

Marissa has recently discovered that she likes the feel of smooth objects on her lips. She has always been fascinated by our water bottles so Jeremy snapped these funny pictures of her and her new found joy.

Cool new game!

Marissa is always taking off her speaking valve (PMV). Not quite sure why she feels the need to do it so often, but it is very aggravating for us. I know it is harder for her to breathe through but I think it is more of an attention grabbing habit than anything. The other day she was plucking it off every 30 seconds like normal. Out of pure exasperation I took her by the shoulders, looked her in the eyes and calmly said "Marissa, put your PMV on" knowing full well she was not going to obey my command. Well, this little booger took her thumb and plugged her trach with it! She has done this before many times but never in relation to us talking about her PMV. She obviously knows that the PMV gives her a voice and knew that I wanted to hear her voice, so she did what I asked. She started jabbering away and left her thumb in her trach for about 30 seconds, breathing in and out of her mouth and nose the whole time. The PMV is a one way valve that allows her to breathe in through her trach and closes when she breathes out, forcing the air up through her vocal chords and out her mouth. When she plugs her trach herself she is breathing 100% in and out of her mouth around the trach tube. So now we play the "put your PMV on" game quite often. We captured a little of her new game on video. I apologize for the quality of the video and the silly woman making noises in the background, but it was the only way to keep her attention. Notice the PMV (purple thing) hanging from her tank top strap! That's our silly girl!!

No news is good news...maybe?

Today we went up to Denver to The Children's Hospital for a consult with the geneticist. The appointment went really well. We had been anticipating this appointment since our initial consult in April. That was when the doc told us she suspected Marissa had a syndrome called Rubinstein-Taybi. This diagnosis would explain and tie together all of Marissa's physical issues and finally give us something to tell people when asked the question "what is her primary diagnosis?". There is a blood test for this syndrome, but due to the fact that it is an extremely expensive test and our insurance co. would not let us know if it would be covered prior to having it done, we opted to not do it yet. She could be clinically diagnosed if the doc sees enough evidence firsthand that would lead her to believe she truly has it.

Jeremy and I have very mixed feelings about her being diagnosed. Who in their right mind would hope that their child has a syndrome? On the other hand, we have been told from the beginning that she has to have a syndrome of some kind. It is the only way to explain her multiple birth defects. Having a diagnosis would finally put a name to all of this and let us know what to possibly expect for Marissa's future, however, it would not change her course of medical treatment. We are doing everything for her that we would do with a diagnosis.

Well, we did not get that diagnosis today. I am very happy about the reason, though. RTS has many physical characteristics, but also some degree of intellectual disability and other neurological issues. The doc said that her cognitive skills are very good and right in line with her peers. In fact, she said that some of her skills are actually in the 18 month range and she'll be 16 mos. on Sunday! (she knows 13 signs and can do them when asked, and she is actively communicating some of her needs like a nap or a diaper change). She said she can't rule the syndrome out, but if Marissa is diagnosed at a later time, she is the highest functioning and cognitively on-track kid she's ever seen with RTS. That is great news, but we still have no diagnosis. Oh well, we've gone this long without one, right?

In other great news, Marissa is officially on the growth chart for her weight for the first time ever!!! Yay!! She is 21 lbs. now, which puts her in the 25th percentile for her weight. And her height is finally getting more proportionate to her weight. She has been tolerating 100% 30 calorie formula at night and been throwing up less too.

Time for the happy dance!!

Here's hoping...

Marissa had a salivagram done today. This is a procedure where some dye is squirted in her mouth and then, for at least an hour, sometimes an hour and a half, she lays under a scanner and a technician follows the dye through her system. By the way, she is supposed to lay as still as possible. An amazing feat for any 16 month old!! Then, if the dye doesn't move in that period of time, they ask you to come back for a second "delayed picture" to see if it moved. She had this done because several of her docs think she aspirates on her saliva. She had one of these done when she had pneumonia in December and it turned up positive for aspiration. I had always doubted that diagnosis because it was done when she was very sick and she might have a tendency to aspirate more when she is sick. I don't have any medical knowledge to back my theory up, just "mommy gut feeling". I asked her docs if she could have a false positive because of this reason and they all said "It is not likely, but..." This, of course, leads me to believe that I may be right. Needless to say however, we had to do something to protect her lungs. So, during her bronch in April, the doc injected botox into two of her salivary glands. This is to paralyze them so she produces less saliva and can handle her secretions better. It lasted for two weeks. She is having another bronch in August and I wanted to test her again beforehand to see if she aspirates and, if so, we would discuss what route to take from there.
So, any of you who know Marissa know that she has a very strong dislike and distrust for anyone wearing a lab coat and a stethoscope and for rooms that have exam tables or big machines in them. She is fine until one of the aforementioned individuals gets within about three feet of her or we lay her on a table. Of course, both happened today. As soon as I sat her on the table, she burst into tears. Then I had to lay her down and she went into hysterics. Then the technician (who was wearing a lab coat AND a stethoscope!) came near her and she cried harder. Then he squirted the dye in her mouth and she gagged and almost threw up! We swaddled her in a warm blanket and the tech went over to his desk, about 10 feet away (very much outside of Marissa's personal space). She calmed down. Then the tech had to come over and make sure she was positioned right and she went ballistic again. As you can imagine, I am thinking we'll both be lucky if we survive this! Finally the tech went back to "his space" and Marissa calmed down again. She still was acting uncomfortable and irritated so I started stroking her hair. And then God blessed us both and she fell asleep! She slept through the whole procedure! She did actually wake up about 3 minutes before it was over. It was really kind of comical to watch her crane her neck to look for the tech. Once she got him in her sights, she never looked away. She just had to make darn sure he was staying in his place!
We only had to stay for an hour and the tech said that even though it is up to the doctor to make the final determination about the results, what he saw looked good. He said from what he could see, she swallowed the dye and it went straight to her stomach. And we didn't have to go back this afternoon. So overall, the procedure I had been dreading for weeks turned out really well. We'll know the results when we visit her ENT on the 14th. I'll let you all know how that turns out when it happens.

She is too smart for our good!!

Do you like my new turban??

We have figured out that Marissa likes to "play dumb". Little does she know that in doing this, she just proves to us how smart she really is! Pay close attention to the shrugging of the shoulders, and the tiny shake of the head "no" after I ask her a question.

Happy 4th of July!!!

Very Patriotic
What a big girl she is becoming. Her shirt is size 18 mos. and her shorts are size 12 mos. She is still our tiny girl, but she is catching up. Yay!!!

Wild Woman Hair!

GUSH!!

Or really more like a slow drip over about an hour and a half. But the outcome is still the same. When Marissa sleeps, she moves around the whole crib. For a "normal" kid, this would not be a problem. But for Marissa, who has three tubes and wires attached to her when she sleeps, it presents a big problem. When she moves her foot , the very sensitive pulse-ox alarm goes off. When she rolls over and shimmies down to the other end of the crib, her trach mist collar comes off her trach and ends up humidifying her chest or her back or the side of her neck, doing her absolutely no good. And, if she squirms enough, her feeding tube becomes disconnected from her stomach. That is what happened this morning. She gets a continuous overnight drip of formula all night long and this morning when Jeremy's alarm went off at 5:40, I got up to check on Marissa, rolled her over and discovered a huge wet spot extending from her diaper area to the top of her chest! I checked on her last at about 4 am, and I check on her regularly through the night to prevent this very thing from happening. So I had to wake her up at 5:45 to sponge bathe her and change her clothes. And then of course she wouldn't go back to sleep, so it's going to be a long day! It's not like this has never happened before, I've just never had a blog to write it in before! Oh well, such is the life of a trach and g-tube mommy!

It all makes sense now. Duh!!

A couple of months ago we would look at Marissa and ask her to say "Mama" and "Dada" and she did. Since then she has only been saying those words while she is babbling, not purposefully. Recently, when we sit her down and ask her to say those words, she says "Rara". We try to pronounce them very slowly and deliberately, but still all she can say is "Rara" for both Mama and Dada. I was getting concerned last night until I remembered my sister Michelle had similar problems as a toddler. I brought it up to Jeremy and he told me he also had speech issues as a toddler. Well, both Michelle and Jeremy had recurring ear infections and had tubes placed. After they got their tubes, their speech improved. This is because they were hearing the words incorrectly before they got the tubes! Ear infections are due to kid's ears filling with fluid and not being able to drain properly. Can you remember going swimming as a kid and getting water in your ears that just wouldn't drain? All day long it sounded like your head was still under water. This is what is happening to Marissa. She is pronouncing the words just like she is hearing them!
Poor Kiddo! August 8th can't come soon enough.