Lucky Girl...

This is suppose to be all about Grace but I too am a lucky girl. How about Grace's gift idea for me? I was SO impressed with her on that post-big words and a huge idea for a 8 year old. I thought her tutor was fabulous but now I am convinced! :) I was totally surprised. I actually was weired out when I saw there was a new post. I knew I hadn't done it and didn't know that D had at that point. As I read it, I went from panic that my little girls blog had been hijacked by a weirdo to complete shock - the REALLY good kind. My hubby is the best and so full of surprises- I am a lucky girl! I find it incredible that he still likes me so much. He has seen all my moods and not all of them are nice, I assure you! So glad he asked me to dance, that is how it all got started, and so glad he followed it up with a marriage proposal three years later. He literally had me from hello!

Fast forward 16.5 yrs from him asking me to boot scoot around the dance floor and here we are today. We had a really busy week celebrating birthdays last week, Caroline, Grace and my mom were all birthday girls. Judd is a little confused about having to wait till March for his since both girls got to have theirs. I want him to stay 3 forever so March seems too soon for me. Anyways, Grace is still doing really well with the trach. Speech is making some improvement although it is hard for us to measure since we understood so much prior to the surgery. We call it Grace-enese - it's our second language. Certainly a stronger voice and in isolation she can make much clearer letter sounds it is just the conversational speech that is harder to evaluate and measure. We had a follow up with the ENT last week and got a great report. We are trying to get a sleep study sooner than the next available, which is March, to get an assessment of her breathing while she sleeps. If all is well and the report shows we are back at baseline we can get the trach out. I am confident it will be out as soon as we have our sleep study. We are hoping to get in done sooner at another hospital or get moved up via a cancellation at TCH. It seems ridiculous to keep it in for 4 months just waiting on a time slot for the test.

Our schedule is so full with therapies, I am not sure how we could have stayed in school. The home bound schooling has been great. It allows us time for all the rehab stuff that she needs without all the time restrictions. Her spirits have been much better the last few days, remember she has been celebrating and that seems to be when she is at her best! The last 4 nights she has run a fever during the night but is fine during the day even without Tylenol so that is a little mysterious. Did you know that when you run a fever your heart rate is higher? It's a new nugget of information for me so I thought I would share. I hope it is nothing but it is a little strange. Being that I am not really into mysteries I hope it goes away tonight.

My computer needs some time at the techy hospital before I can post my recent photos. I do have some fun ones to add so just know the pictures are "in the mail".

Happy Birthday to me.....

Hello everyone, its me Gracie! After seeing that baby from the ETrade commercials working a laptop I thought I would give it a try. Its actually not that hard.

I saw the doctor Tuesday and got a great report but I'll let mommy update you with the details as she is much better at it than me. (She will be pretty shocked to see that I was able to get on here and update my blog! Can't wait to see her face.) I'm here today because its my 8th birthday and I have a gift on my mind.

So mommy, I want to thank you for taking care of and fighting so hard for me over the past eight years. You have been my biggest fan and supporter and allowed me to come so far during that time. Thank you for the countless trips to the doctor's offices, the many trips to therapy, the long, exhaustive phone calls with the insurance companies and all the other major sacrifices you have made in order to give me the best chance to succeed in life. I know all of those things are important, but even without them, I know that just having you as my mommy would be enough. (Oh and daddy mentioned something about you making him a better person too) You are an awesome mommy to me, Judd and Caroline and we love you so much for it. I know I am not always on my best behavior and can create a great deal of frustration for you. I'm sorry for that but one day I will be able to better express myself thanks to all of your efforts.

So, that gift on my mind, well, its for you. You know how I like paying for things since Mr. Ben and Mrs. Alice gave me that Pappasitto's credit card? Well, I hopped on the web and booked you a little getaway for later this month. You deserve that and so much more. I hope its a relaxing week for you. I know it will be a fun one for us watching daddy play Mr. Mom. : ) You can find the tickets in my cubby next to my crayons.

Happy Birthday to me! You are the greatest gift I could ever ask for! I love you.

By the way, to everyone posting on my blog, thank you for all the sweet messages. They have and continue to encourage me a great deal.


Bon Voyage!

Gracie

A fresh week...

I look forward to Monday mornings- they are so full of hope! I know that is not the normal response to Mondays but I usually start the week with a list of things to do. In my current profession of motherhood, much of what I do is mundane so I think of ways to improve it or change it up a bit. So when I think about Monday I get motivated and hopeful that this may just be the week, "I have it together". Let me assure you that when I still feel that way on a Friday you and the rest of the world will know it- I will be throwing a party in celebration. So far, I haven't made it past Monday. I am only 34 so I have time, right? This week should be exciting. It is full of birthdays! Caroline turned 2 today, Grace will be 8 on Thursday and my mom will celebrate her birthday on Friday (she wouldn't be happy if I put her age)! I have some cute pics of Caroline to post but my laptop is having issues tonight. Check back and I will hopefully have them posted tomorrow on our family site www.rothtx.blogspot.com.

This past week will NOT go down as a family favorite. I am all about making memories and having traditions for our family but some days and moments I hope they never think about again! We are still having leadership issues around here in the ranks of the little ones. "Just be nice", is a frequent saying through out our days as is "change your color", "go to your room", and some "arg" growling. The other day in frustration I gritted my teeth and groaned not very lady like I know. Anyways, Judd turned to me and said, "Mommy, you need to use your words". That too is a frequent quote around this house I just hadn't been on the receiving end of it before. I was glad to know that they at least listen and understand it. If you know where I can buy some patience I need some - I seem to be struggling with most of the fruits lately!

Grace aka, as she referred to herself today, the birthday girls' sister, is in the full swing of things with therapy and her activities. Our calendar if very full with just her stuff. My planning skills are really being stretched to get it all in these days. On top of that, I think she may be sneaking off to drama classes too. She seems to be creating drama and reacting dramatically to things. She is just beside herself with the smallest trigger and when she gets that way it is not pretty to say the least. Caroline evidently snuck out to drama class too in preparation for turning two and when you get them unhappy at the same time it is loud! I may need to get some earplugs for around the house just to hear myself think. Grace's trach is doing well. I think her body has adapted nicely to the new airway, her monitors have not gone off the last 5 nights in a row. We are going back to see the ENT on Tuesday so I am anxious to know what he thinks about that tad of information. She seems to be breathing well at night. That just reassures us the trach is temporary and that she is safe with the flap. Her speech is somewhat better, certainly stronger but I still don't think "average Joe" would understand her name and phone number should she get lost and she is a wanderer. Hopefully by her next birthday her and Joe will be chatting about all sort of things and he will understand it all! Check back later in the week for birthday pics. Blessings!

Today WILL matter tomorrow...

I talk to myself a lot! I am not sure if that is how the saying goes or not but that is the way I keep repeating it to myself. I much prefer the excitement of dramatic and drastic change BUT for some reason I only see that in retrospect. We are doing lots of therapy and so the calendar revolves around Grace's appointments. When Grace was two days old laying in the NICU a precious friend told me these words that I repeat every time we go to therapy, "Bridget, you are going to think the things the therapist do are silly but stick with it, it will make a difference over time". Yes, more talking to myself, I am sure I have issues. Carrie's words that day have cost a lot of time and money but she is a wise woman. A session of therapy (speech, occupational, physical) seems useless in isolation but over time you do see improvement. So these today's we aren't accomplishing a whole lot nothing dramatic to report. We are getting out more and that seems to have helped Grace's mood. I am not sure the germ docs would approve but we have to balance emotional health with physical health, ours and hers. She loves to go, go, go and we believe God made her that way and so that is what is best for her. Healthy - isn't just physical health.

Have I told you our nurse has been such a blessing? She is a great fit for our family and she sure lessens the stress around here. When she is here I have extra hands and it just feel free er to try to be normal. Normal with a nurse around sounds silly but whatever. God is just so creative in the ways He provides. I never get it right when I come up with the answer so I have become a very vague prayer, here is how I feel and I know you are great so just surprise me, Lord. I hope He doesn't think I am lazy but I seem to just waste my time coming up with solutions to find that His ideas are better. My brain just doesn't fathom the things His does and so even though things are NOT as far a long as I would like right now I know He has something even better in the works! I can't imagine what it is, what it looks like or really even what it sounds like but my imagination is a dud compared to His.

Just random pictures, I came across theses pictures the other day. She was turning 5 and I was trying to get a cute picture of her holding up 5 fingers in my attempt to get the perfect picture I pushed too far and took the fun out of it. Sometimes, it's hard to know just how far to push... For some reason they don't show up in the order I posted them but I bet you can guess the order in which I took them by her expression!

Blessed and Stressed

So Grace wanted to know when Judd was getting a trach. When I told her he didn't need one, she asked about Caroline. Then when I said she didn't need one either her list of names went on and on and on. I started by explaining why some people wear glasses and some don't but she was looking for a connection. One we don't have - another kid she knows with a trach. Sometimes different is awesome and sometimes it's not. She is frustrated and I really don't blame her. When she has a meltdown, and those are frequent, I secretly wish I could join in! I am sure I would regret it, so I don't, but it just sounds liberating. Grace is a blessed little girl in so many areas of life but she is also a stressed little girl in the areas of life most of us take for granted. We, as a family, have been incredibly blessed and provided for in a million ways. We have been the recipient of the most gracious and generous gifts and it far outweighs the stresses of our life but it is still sad to watch your children hurt. I know Grace is amazingly resilient but she is also unpredictably frustrated and irritated and she is looking for someone to blame! Judd and Caroline adore her but they are paying a high price for having Grace as a sister these days. We keep reminding her that she has a leadership role. Little eyes are watching and learning from her but she prefers to submit to her emotions. And, I suppose I do that a lot too! I pray that we can all celebrate the blessings and minimize the stresses as we put one foot in front of the other and go about our days!

What is a pharanegyal flap?

Just a little Anatomy class for today! For those of you who are curious here is a description and explanation of Grace's surgery.

A little history- She was in distress at birth from inhaling meconium in-utero which resulted in her being born with chemical pneumonia. She also had very low muscle tone which suggested there would be other issues. Then the adventure began! Long story but in summary, she was very mysterious for years and eventually at 5 was diagnosed with a rare genetic syndrome.

One of the things noticed just after birth was that although she would nurse or take a bottle, she wasn't able to get anything out of it. That is how we discovered she had a cleft in the muscles of her palate. So although her palate looked normal, the muscles underneath were not connected. At 6 months old, they were able to surgically connect muscles in her soft palate. Then with LOTS of therapy she was eventually able to use them with some degree of efficiency . Those muscles help with swallowing and speech. The creation of the pharyngeal flap has been suggested since she was 3 but because of her other issues and her small size, they kept delaying it. This year we begged for them to do something. We went with the saying, "if there is a will, there is a way". They agreed that the window of opportunity was closing for her to successfully correct the speech patterns she has created in an effort to compensate for the defect. So they began to think out of the box. Her anatomy did not allow her to make many of the sounds we use in communication. For example, prior to the flap if she were to blow a whistle nothing happened. If she pinched her nose closed though, she could blow it and make a sound. So in sounds that need pressure the air was escaping her nose. Which results in her sounding like she is talking while yawning. This flap changes the anatomy and gives her the ability to make those sounds. However, the muscles have to strength and adapt to it. It also involves a lot of motor planning but she now has the potential to speak clearer. We will continue to invest in LOTS of speech therapy- man, how I wish there was a return on investment there! The solution the team proposed, after our appointment of desperation, was to do the flap BUT only if they secured the airway with a trach. And that is how we got the flap and the trach.

A huge misconception, and frankly prejudice, is that if you can't speak clearly then you must be retarded. This was one of the main reasons we were so adamant about doing this for Grace. Although signing is an excellent alternative to verbal speech Grace has poor fine motor skills and so even that would have to be approximated. We have tried communication devices too but Grace truly has a desire to communicate with her words. For years she thought it was everyone else's hearing that made them unable to understand her! Once she realized it was her and not the listener she was already sold on verbal communication. We have been very intentional about telling her that although her words are difficult to understand she still has very good things to say and her thoughts and ideas are great and well worth explaining! Granted, it takes a lot of effort as a listener to understand Grace, but it is well worth it. She is very funny and intriguing. The goal of this surgery is that it will be easier for her and the listener and she will be able to communicate effectively with us and the average Joe.

So if you like the gory details this will explain how they did it...

They cut a piece of tissue from the back of her throat and and this is the flap. They then cut open her soft palate back by the uvula, separated it inserted the flap, then closed it back up. So it is sort of like a bridge across her airway, from the back of her throat to her palate. This is not normal anatomy it is a compensation for not having normal palate length, tissue and muscles in her palate. The flap covers a portion of her airway and thus the trach. Before the surgery and in normal anatomy the airway is open and now with the flap is taking the middle part of it. For instance instead of a circle it is now a circle with a thick line through it. Her breathing from her nose will come from the sides of the original airway and from her mouth rather than a wide open airway from her nose. This takes her brain learning how to adjust. While awake that is rather natural but in sleep with the body and mind relaxed the risk is that the brain doesn't adjust it's breathing and she stops breathing. The trach is an insurance for her, not her main airway but when asleep she uses it to breathe until her brain adjust to her new anatomy. Temporary but necessary. There you have it! Rather useless information for most but now you have a new word for Scrabble...pharyngeal.

What just happened?

Now that we are home I find myself not sure what just happened! Not with the surgery but with the day in general. I have a hard time finishing a thought. The little ones are a bit more needy since we got home and Grace is having a lot of meltdowns. Everyone is recovering from a change in routine and I am hoping it is a speedy recovery. Tomorrow we are having nurse come for several hours that will help with Grace's trach care. She will be here some nights and some days. Her being here at night will let us sleep without having to worry about the monitor alarms and the day will provide help with Grace's care. Although Grace requires minimal trach care - as trach care goes- it is still a big deal and she requires a lot of attention. We are just trying to figure out what our days will look like. Therapy will be starting hopefully next week and home bound school started this week so our calendar is very full! We are still trying to decided how germaphobic we will be with Grace which will determine how much we can get out and have her around other kids. The risk of infection is higher for her but the risk of cabin fever is also VERY real!