"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Tuesday, April 27, 2010

Let's Get Physical!

Just thought I would share what Marissa's Tuesday morning work out looks like:


She is doing really great in Physical Therapy. She has so much fun while working with D, as you can obviously see, that it doesn't even seem like work to her! She is no longer popping her hip, or only does it so infrequently that it is no longer an issue, which is what she started back in PT for in the first place. So that is awesome! We have discovered some other issues she needs to work on, so PT will continue for her indefinitely. I am confident she will work past them with no problems.

I just love how she counts. It is so stinkin' cute, don't you think?

In unrelated news, Marissa is feeling so much better. Thank you for all your prayers and well wishes. She is pretty much back to 100% now, not even needing O2 when she is sleeping. I have no idea what she was sick with or where she got it but HOORAY for her being all better!

Also, more good news: She gets her cast off Thursday! YAY! I am so looking forward to it being gone. She has been such a trooper about it, only acting like it itches and bothers her a couple of times.

Thanks for checking in!

Wednesday, April 21, 2010

Bad Blog Buddy

I have been out of commission, for the most part, the last week when it comes to reading and commenting on my friend's blogs. Sorry about that! I will be trying to catch up and stay up to date now. I miss you guys!

Marissa has been sick for the last week. It started last Wednesday when Jeremy noticed she was feeling a little too warm. The next day she had a low grade fever and just did not feel good. She just wanted to lay around, which anyone has ever seen Marissa in person knows is totally out of character for her! She is usually 100 miles an hour from sun up to sun down! Her O2 sats were staying up and we were treating her fever with Motrin & Tylenol. She seemed to be doing better Friday evening into Saturday.

Then Saturday night, she crashed again, this time needing O2 while she was sleeping. We got up and took her to Urgent Care Sunday morning as soon as they opened. Since she has a history of pneumonia, we requested a chest x-ray. They also did a strep test and trach aspirate. Everything came back negative but the radiologist did say that there was some inflammation in her lungs and she may be trying to start some pneumonia. So they put her on Zithro to cover what may be starting. All day Sunday and Monday she looked horrible and probably felt as bad as she looked. Poor Punkin!



Finally, Tuesday morning, she was acting more like herself. She walked from her room to ours, requested her animals (which she had not done in days!) and played with them on the bed. Good sign!

She has steadily gotten better and today she only needs a little O2 while she is sleeping. She has no fever and is back to her 100 mile an hour self! She must have been saving up all her bad behavior that she felt too yucky to act out for the last 6 days because today, she is a freakin' holy terror! I hope she calms down soon or I'm going to be checking into a mental hospital!

I'll leave you with a few silly pictures we took the other night. We were doing CPT on Marissa to break up her lung junk and decided to have a little fun with the CPT clappers!









I guess Marissa learned how to wink while she was sick!


Thanks for understanding my absence, friends. I'm back now!

Friday, April 16, 2010

Cheated and Robbed

I am about to pour my heart out. You are officially forewarned.


There are certain feelings I try to keep at bay. Feelings of resentment, feelings of being robbed and cheated out of "normal". The normal pregnancy and infancy I missed out on with Marissa. The normal toddlerhood. The normal anything. And the normal she has missed out on too. I try to keep these feelings at bay not because they are not real or valid, but because dwelling on them takes my focus off the positives in my life. Namely, that Marissa is here, happy and thriving.

But these feelings are very real and very valid. And they bubble to the surface periodically and unexpectedly.

I had a dream that brought all these feelings up once more. In the dream, I had just given birth to a baby boy. I was so in love and the feeling was compounded by being able to have my little family all together in the same bed. The hospital said it was a new concept they were trying out to have the whole family (father, mother, new baby, and siblings) in the same bed so everyone can bond. I liked it. No, I loved it.

I was able to breast feed my new son. Oh, the feelings of pure joy and deep love I felt! Heart soaring. Soul flying. Indescribable.

At one point, I looked at my baby boy, cradled in my arms and saw an all too familiar look cross his face. All of a sudden he projectile vomited. The nurse came running in and said, "Oh my, that's not just spit up. It looks like he threw up everything you fed him. And it looks like way more volume than his little tummy could handle. I'm not sure he knows when he is full. He may not be able to regulate his own feeding, so I recommend you start pumping and feed him by bottle so you can monitor how much he takes in." Great! I already had a kid who I couldn't breast feed because she never learned how to eat by mouth. Now I couldn't breast feed my new little one because he didn't know how to stop eating! My heart dropped to my toes. I was distraught.

And, all of a sudden, I was no longer in the hospital with it's cozy soft lighting and family bed. I was at home now, and lights were dim. I had left the hospital and was actually talking to the nurse over the phone. Once she said I would need to pump my breast milk, I looked at the clock on the wall and realized it was late in the evening. The lactation department at the hospital was where to rent pumps and they were probably gone for the evening. I started to feel desperate.

I also felt sickeningly inadequate. I could not provide for my baby like I was supposed to. I had failed. Again.

I tried looking up the number for the hospital's lactation department but the lights were too dim for me to read the phone book. I grabbed my babies up, strapped them in the car, and told Jeremy to just drive me to the hospital on the off chance someone would be there to rent me a pump.

This is where my dream ended. I distinctly remember actually feeling the pain of engorgement as I was waking up. It was the strangest yet familiar feeling.

Obviously, I was unable to breast feed Marissa. The guilt and sadness that brought on was overwhelming. I was lucky enough to have a strong supply of milk, so I did feel like I wasn't completely failing her. I was able to pump for Marissa for five months. I had about another month of milk saved up in the freezer for her. I loved that I was able to provide the nutrition God intended for her but it had just become too much of a task to sit and pump every three hours, 20 to 30 minutes at a time with a little one that I had to suction, hook up to a feeding pump and do cares for, above and beyond the "normal" newborn stuff.

I became seriously depressed when I stopped pumping. I had always known that I wanted to breast feed my babies. It is not only the most nutritious, natural, and beneficial option for the baby, it is a bonding experience like no other. It is the one thing only a mother can do for her child. It is for this particular reason that I actually took pride in the fact that I could provide breast milk for Marissa. The doctors and nurses may have saved her life, even more than once, but they could not do what I could do.

The fact that she could not actually nurse cut into me like a knife. Unbelievable pain. When I made the decision to stop pumping, the knife went deeper. Deeper still when I came down to the last bit of frozen breast milk. I actually wanted to hold onto that bag forever, like a badge of honor that I could have showing how I physically loved my baby.

I haven't thought much about this whole breast feeding thing until today, after that dream. I realized today, that aside from being overly tired, stressed, and hormonal, I am still not healed from the trauma of not being able to provide "normal" for my baby. Not sure I will ever be. I do feel cheated and robbed. And I do feel guilt. I pray there is at least one more chance at normal for me, one more chance at redemption. Either way, I do know that I did the best I could for my baby and, someday when she is old enough to hear about it, she will understand. And I pray she will love me for it.

Wednesday, April 14, 2010

Lovin'...

... Rissa's new Speech Therapist, Julie! Today was our first session with her and she is fabulous! I am so glad we have made the transition out of the early intervention program, which is how Marissa's former ST came to us. Not that her former ST was bad, it was just time for a new perspective and a new way of doing things. Julie is a feeding specialist as well and has some really great ideas. Julie had Marissa doing some feeding therapy today and she did so well! She had kind of stopped progressing with her former ST but today she seemed excited and encouraged to start taking some bigger steps and start trying new things.

Julie mentioned that Rissa is not only doing better than she expected, but is also farther along than most kiddos she starts with. A lot of kids have issues with food being scary to them and, luckily, this has never been the case with Marissa. The girl loves food, she just doesn't know how to eat it! Julie is excited to know that Rissa should be getting her trach out by the end of the summer. She said she knows many cases where a trached child started eating so much better after they had their trach removed.

I am just so excited to already see great things happening and I can't wait to see where Julie is able to take Rissa on this journey!

I am also lovin' Rissa's ENT, Dr. P. I have stated before on this blog how much we love her but it is just re-confirmed with every interaction I have with her. I have been emailing back and forth with her with some questions I have about Rissa's upcoming surgery. The fact that she is willing to communicate with me by email instead of making me talk to her MA to relay phone messages or making me come in for an office visit to answer my questions just makes me so happy! And she answers my questions in a way that just builds my confidence in her more and more with every correspondence. I am still not looking forward to this surgery and her recovery by any means, but I am becoming more informed, and therefore, more comfortable with it.

Just to give you all a better picture of what will be happening with Marissa's surgery in June, I am going to pull a quote from one of my emails with Dr. P. I asked her to go over, one more time, what different types of procedures she was considering:

Options I’m not too keen on are vocal fold lateralization and arytenoidectomy. Both of these are frought with potential complications (i.e. higher risk of aspiration postop) and are much more difficult in a young, pre-pubescent larynx. Marissa’s ideal choice is an endoscopic posterior graft. What this entails is actually taking a cartilage rib graft and endoscopically placing it in the posterior part of the subglottis to expand her airway. Still the risk of aspiration, but to a less degree. Other risks: breathy voice, failure of graft, infection of graft, airway compromise (always a risk in any airway procedure), collapse of lung (from the rib graft harvesting). Pain postoperatively is mostly related to the rib graft site. Hospital stay likely only a few days since she does have a trach. Would begin capping trials, etc postop. Would also be periodically evaluating her airway to ensure good “take” of the graft and no formation of granulation tissue (repeat bronchs within the first few weeks postop).

I can't believe it will be able to be done endoscopically, and therefore, the hospital stay and recovery time will be shortened significantly! I am ecstatic!

So, to review, we just had a really good day today, with really good people on Marissa's team and I just had to share!

Monday, April 12, 2010

A Party!

Marissa went to her first wedding reception last weekend! We were invited to the wedding of two of Jeremy's friends from work. Since she really won't sit still and we didn't want to disturb the wedding, I sat out in the car with Marissa while Jeremy attended the ceremony. Then Marissa and I showed up for the party. She did really well, although she was pretty bored through dinner. As soon as the dance music started, she started shaking her groove thang and it was all smiles! She danced, ran around, and had an overall fun time. She looked so pretty and really kind of grown up. *sniff, sniff* And I think the cast coordinated very well with her outfit!




The Bride and Groom, Devon & Christina





She loves dancing in her Daddy's arms...
video


video

Tuesday, April 6, 2010

Every Kid...

... has to try on their Mommy's and Daddy's shoes.








It's just one of those kid rites of passage.


HOORAY!!