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!

Dr. D and Me...

We no longer fear the trach coming out at home and us having to reinsert it ourselves. Why? Because it already did! Last night Grace was watching a movie after acting like a crazy kid jumping all around and D noticed the trach was sticking out. Being that we had just changed it 2 days before in the hospital, the what to do's were fresh in our minds. We were able to get a new one in and she was incredibly calm and still. Judd cheered her on by saying, "it's ok, Gracie" while patting her forehead. When we were done putting the trach back in Judd looked at D and asked, "daddy, are you a doctor?" To which Grace replied, "nooooo" which turned on eveyone's giggle box! Our very own Saturday night live!

As for me, I am glad to have the "first trach incident" behind us. It is like getting your first door ding on your new car - it's sort of freeing when the inevitable happens!

There's no place like home...

We are home! I would like to say we got out early for good behavior but there are too many other kids still up there that would love to be home tonight! I am sure we will never, this side of heaven, understand all the whys we have but I do know that it has so much more to do with God's plan in this life than our own. As we were driving home D and I were talking about the original surgery plan. Had we done that- tonight would have been our first night out of ICU and Grace would have just woken up yesterday from before the surgery- and here we are at home! We are just in awe and so thankful. We have had such an amazing experience and been the recipients of so much love and generosity we are speechless or in this case typeless!

On our way home today Grace says, "Wait! We forgot to give this (pointing to trach) back to the doctors". D replies with "Uhhhhhhhh, mommy?". Being that there was just the 3 of us in the truck it was obvious he had just passed it off to me. So I told her we could just give it to them when we see them in a few months. And that was it. No protest, no negotiating, just an okay! I guess she got her concept of time from me because I know we had already covered that on numerous occasions!

Tonight Grace threw herself a welcome home party and the Weavers played along by dropping off cake! There was no denying her a party after Judd and Caroline saw the cake! The Roth's celebrated just being at home with each other but wow are the grown ups exhausted! This next week will be hectic getting therapy, nursing care and home bound school stuff arranged but we are excited to be progressing so well!

It is FABULOUS to be home and it is so true, there is no place like home!

Three little monkeys sittin' in the bed...

How they would have loved to be jumpin' in the bed!!! I am sure had they had a moment alone that is exactly what Caroline would have led them to do! We had the little kids come up tonight for a short visit. They were really glad to see each other. The only kids under age 14 allowed on the this floor are siblings. It was good to be together as a family but the visit was short because Caroline was into everything! I guess that goes with almost being 2!

Grace had another great day. She is getting more and more comfortable with us doing the trach care and being that we have to do that 2x's a day, that is a good thing. D and I are "official" trach care providers now! We will be signing autographs later... but it is true we passed our classes. For our test, we had to show we knew the trach care techniques and change the trach on Grace. It was not nearly as horrible as I had worked up in my mind- I can run with a thought. It is very much like changing a G button (a feeding tube in the stomach) and we had lots of experience with that from her early years. She has added lots of random knowledge and experiences for our resumes.

We could actually be released today if they get all our home health care secured. How's that for early dismissal!!!

Good Morning...

She is doing awesome - it is just a week ago today that she went in for the surgery!!! What progress!

Ephesians 3:20-21 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! AMEN.

Good Night...

Does anyone else's Grandmother say, "good night a livin'?" Mine does and it cracks me up! What in the world does that mean? Anyways, our family had a good night. Darrell had gone home last night to see the little ones and catch up on sleep and tonight I got to do the same -although I haven't made it to bed just yet. I have sort of a caffeine high maybe more like a Judd and Caroline high. It was so great to hug and kiss on them and hear their silly laughs. They are doing great and have been so well loved on by family and friends that they may ask Grace to go back to the hospital more often!

Grace and Darrell also had a good night. She got to be on Radio Lollipop at the hospital. She won a coloring contest and so they announced her name over the radio and she is as proud as if she had won a Grammy! This morning she delayed her plans of doing all the things she had promised yesterday but by the end of the day - she came through and she got it done! Medically speaking she is doing amazingly well. The verdict on to what degree the surgery improved her speech is still out. We are beginning to notice changes already but the next few months and year will reveal the full benefits. All good stuff. I will try to give more detail on the procedure they did and why it was necessary in a post soon.

She is definitely more herself, playing and interacting. She was still fighting and protesting meds and trach care during the day but Darrell said she did well tonight. My prayer all day has been that we could get just one good experience to grow on with trach care and it sounds like tonight may have been just that! She gets so worked up about it that it becomes 20x's more traumatic than it should be. If she could just see it is easier when she cooperates our jobs would be so much easier. A pretty general parenting concept, I suppose!

There is a lot to do in prepartion for us coming home according to the hospital. They have to be sure we have the medical equipment for the trach, the supplies and also nursing services arranged before we can be released. D and I also have to pass our classes on trach CPR (which I hope to never use) and trach care. That one includes learning how to take it out and put a new one in - yikes! I fear this could be yet another fainting opportunity for me! D and I will be competing for teacher's pet so class should be fun!

Good Night a Livin', I just saw the clock! My concept of time is horrible! Tommorow is almost today - so good night and good day until next time! Bridget

Your NOT sick, so get out of bed!!!

That was sort of our tone for the day (after coffee and the earlier grumpy post that is). We needed a kick start and it came from our pediatrician this morning on rounds. She came in checked Grace out and told her she was healing great but she needed to do something with her messy hair! We talked about some ways to better manage her pain and still keep her progressing. Then she boldly told Grace in her very Dr Savrick way, "Grace, you are not sick and you need to get out of bed!" I just love her, she loves complicated kids! With that little phrase our day got momentum. This was not an unanimous vote - Grace has very strong objections but Darrell and I felt strongly that she needed to know she wasn't sick and the trach was just part of her for a while. We got her up, gave her a bath, put her in clothes rather than a hospital gown and told her we had lots to do today. She protested quiet loudly at first but she eventually started to get out of her patient role and be more Grace. The Grace she chose to be today was still a little extreme, at times, but overall a better day for her. She seems to be getting her confidence back and isn't as scared to do routine things. She still has a way to go but I think she is realizing she can still do all the things she did before she got the trach. In her mind and really in her recovery that is super important.

Recovery wise she is healing well. Dr Edmonds removed her sutures from the trach and on Wednesday will change the trach for the first time. She began drinking a little more and ate a few bites today, so that is progress. She's been telling us tomorrow she will do all the things we asked her to do today so evidently she has a big day planned. Darrell and I got our class times for Wed and Thurs to take our trach class and CPR class so it is possible we could get out of here this weekend. Yippee! I am sure missing the little ones!

I have had several people ask about how to post comments to the blog so I wanted to give some instructions. If you look on the left hand side of the blog there is a new section that hopefully gives clear instructions on how to leave a comment. We are so thankful to have so many sharing this journey with us. It is so amazing because it is a journey we did not want to go on and then we have all of you volunteering to go with us - it is just humbling! It has been such a blessing to hear from you and know that others are cheering on our sweet girl. She LOVES for us to read her messages and then she quotes them all through out the day! She has always been a high maintenance girl for one reason or another but it does her well to feel loved!

And on a random note- I am going to get a book tomorrow (for me) and am up for recommendations.
Bridget

Some days...

Some days are better than others and yesterday would go under the "others" type of days. It was rough and last night was really bumpy too. Grace is alert and aware of what is going on and she is not happy about it. She wants the trach "out" and she wants to go home! Yesterday was the first day she started complaining about pain. She says her mouth and neck hurt and she doesn't want anyone getting near either of them. There is a lot that goes on in the trach care and her unwillingness to let us get near her neck is creating some tense moments. She is really hesitant to do anything. We unhooked the monitors last night and carried her around the floor just to get her out of bed. She is just starting to drink a little and today is the day we have to eat something. If not, we will have to address the calorie situation. We have lots on our to do list today and no one is really in a good mood! I asked the nurse if I could get an IV with a caffeine drip and she said she didn't have orders for that so......I will address that with the Dr's this morning when they make rounds. I know there is more to update but I need coffee before I can remember anything else.

Welcome to GraceLand...

We moved to a room from the POD and it is so much quieter and roomier! Grace is still doing well and is becoming more active. She is turning on her side and sitting herself up at times. She has arm braces on her arms to keep her from pulling at the trach or sticking things in her mouth but we have been able to take them off for little blocks of time. She isn't messing with much other than the controls on the bed. She likes that she can raise her legs and back up and down. It is providing her entertainment. It is like a little roller coaster ride lying down. Speaking of laying down, I slept so good last night on our roll out bed. Darrell tended to Grace during the night and so he is sleeping now. We woke up this morning to graffiti on our dry erase boards (as seen in the picture), cards and pictures decorating the cabinets and stuffed animals atop of IV poles, and monitors. Darrell was bored during the night so he decided to spruce up the room! So thanks, daddy for making it as fun as possilbe to be here. Room 29 is nice and it's one stop closer to home! We are all missing the little ones!

Party Status...

The surgery party is still in full swing which is why I am writing this at Starbucks across the street in the middle of the day. Caffeine is a must for these sort of parties (thanks, Cassidy for my coffee). I wish I knew why hospitals make you so tired it is one of life's great mysteries. We are thankful to be out of ICU but our current set up is really similar and so we are hoping to more to a private room soon. We will still be in the PCU with all the monitoring but we will get a shower and couch of our own. Grace is more alert today and this afternoon we tried to substitute Tylenol with codeine for the morphine. I love that she is more alert, it is just hard to watch her be so scared. She doesn't seem to complain of anything hurting but she is really quiet and apprehensive and shakes her head "no" anytime walks in wearing scrubs. We keep telling her the worst is over and she will be ok; but, she isn't convinced of that just yet.

The exciting part of the party today (and I use the word party lightly) was that we gave her a bath in her bed and I was able to hold her for a few minutes. We also tried the plug on the trach and her oxygen levels didn't change so Praise God. I am not sure if they will try that with her sleeping yet but at least we know that her air way is clear enough for her to breathe on her own while awake and that is AWESOME. It is still too early to assess the speech benefits because of the swelling in the palate and the heavy secreations in the trach. How different her life will be when she can communicate clearly - as much as I want that I can barely wrap my mind around it!

So today has been forward progress. Our specific prayer request would be that she would not be so afraid and that she would be accepting of the trach!!! We also would ask that her speech show the dramatic improvement that this reconstruction allows.

Today we started learning a bit about how to care for the trach hands on and that will continue on for the coming week. We have a few classes and test we as parents must pass before we can go home with her. So we all have our work cut out for us.

Grace woke up this morning asking for "the Boy", aka Judd. We told was with with Aunt Sheri, Uncle Troy and the boys and so she settled for just calling him. Caroline is with the Weavers this weekend and enjoying being the only princess, I am sure. Judd and Caroline are doing great and having so much fun. We are so thankful to all of you who are walking throught this with us in so many ways. Instead of wishing to win the lottery everyone should wish to have our family and friends. Your love, support and encouragement make our hearts richer! That reminds me, my hubby said, "bring me back some bold coffee, sweetHEART". So I need to get right on that!

Movin' on up...

Have you ever wanted to just fast forward your life? I know that I have - today we sort of got a little fast forward button on our stay here in the hospital. We moved from ICU to a progressive care unit! How exciting is that? Our quoted 5-7 days changed to 24 hours! We are still in a closely monitored unit but it is certainly progress and a much less intense environment. She is off oxygen and doing well with the trach open. We haven't yet tried to cap the trach because she is still somewhat sedated and still having to be suctioned for the secretions. She has watched some tv and been in and out today. We even got a glimpse of a smile from her when we were reading her comments from the blog. It has been a great day!

Last night we took turns sitting at her bedside. It is SO crazy how your sense of time is left at the door when you walk into these walls. My sense of time isn't so good anywhere so here I sort of enjoy not being the only one who is clueless to the clock. However, I did watch the clock to be sure and make the "Midnight Madness" sale in the gift shop last night. It was from 11pm -2am, there was some cute stuff and I enjoyed a good bit of retail therapy in my outing! The sleeping situatuion was hilarious! Let me just say I love my hubby and now I have even more reason to love and appreciate him - he doesn't snore! I realized last night that not all spouses are so fortunate. I had the first shift last night at the bed side - after my shopping trip- and there is only a chair to sit in. So knowing that I didn't expect any sleep but the mom in the pod next to us I guess had a more comfortable chair, perhaps one that reclined, and she was in a deep sleep! One that caused her to snore REALLY loud as if she was getting the best nights sleep ever. I am sure she needed it and so I am happy for her but I did think perhaps I was on candid camera and they had a fake snorer just to see my reaction! When Darrell and I switched shifts early this morning I warned him but he failed to warn me about the sounds I would encounter in the family room! So the family room is private for the PICU parents at bedtime - there are recliners and they provide pillows, blankets even muffins and coffee when you wake up. You sort of have a slumber party with 20 or so other parents. As with all slumber parties you do wake up really tired from the lack of sleep. Only at this party it wasn't all the chit chat that keep me from falling asleep - it was all the snoring! There was all kinds of snoring patterns going on. I am sure that a few had sleep apnea - or a grizzly bear was snoozing among us! Tonight will be different for us but knowing that room is full every night of the week, of the month, of the year is a humbling. Not because of all the snoring you must endure during your stay but because you know how your heart hurts for your child as you realize all you can do is love them through it. You share that with every parent no matter how different you may be outside in the world or how loud they snore. Here you are just a mommy or a daddy that want there baby to be safe, healthy, happy and loved! And as it should be - for we are all created equal!

Amazing Grace...and then all the details

When I found out I was pregnant with Grace I had just finished reading "In the Grip of Grace" by Max Lucado (a great read if your looking for a good book). I was so amazed with God's grace and just the whole concept of grace that it led to Grace being named Grace. My mom has sang her the hymn Amazing Grace since she was a tiny baby and it is a favorite for Grace. She sings it often but her version goes like this, "Amazing ME, how sweet the sound..." and she sings it boldly. It sounds a bit self centered but considering her age I am sure that the Lord finds it precious. Today was a huge day for her and for our family and I believe that God will use it to make her stronger and bolder and that she will sing HIS songs with clarity in her speech and in her heart for all the days of her life! Gods grace and promises sustained us today. It was scary and it was gut wrenching but it was also awesome. I hope to look back on this day as one of the best days of our lives.......we certainly aren't there yet, but we know God is good and he is faithful.

Grace did wake up after surgery and we did get to hear her sweet voice - ok, it was sweet to hear but not really a sweet tone. Her comments were, "I want out" and "NO!!!". How awesome that we did get to see her open her eyes and interact with us. And then on top of that we heard her voice........that is huge being that she has a trach and it is open! All amazing stuff and better than we had expected. And for you girlies that were worried, NO, I did not faint when I saw the trach! Darrell was pleased! :)

We are in ICU now and she is out of it but not completely sedated in a paralyized state. She looks around every once in a while and even lifted her little hand to wave a few times. She is comfrotable and doing well. Thank you all for walking with us in faith and carrying us through this experience! Looking forward to what tomorrow may bring.....Bridget

Another quick surgery update....

Grace is out of surgery and in recovery. All went very well. The trach is in and she is using it with some applied oxygen but no ventillator which is great news. We are so thankful for a successful surgery and look forward to an equally succesful recovery. Praise God!

Quick Surgery Update....

We just met with the first surgeon and got a good report on his procedure. Gracie is still in the OR and they are beginning the next procedure. Will update as soon as we can.

Today is the day the Lord has made....

Today is the day the Lord has made we will rejoice and be glad in it! Today is also surgery day so that is a little more challenging to sing than on most days. We are here at Texas Children's and all checked in. We are passing the time by reading sweet email posted and she is loving it. It started off rough this morning with her crying that she didn't want to go to the doctor but stay home with the babies instead. But after going over a list of all the people who love her and will send her messages and she is much better now. Judd had a hard time this morning, he wanted to come so that was a bit heart breaking to leave him and as for Caroline we didn't wake her I couldn't bear another crying baby this morning! They all know we love them and that mommies and daddies always come back - so for now, we will just go with that! We passed our assesment this morning so now we just wait for our name to be called and off we go! Lord be with us!

Twas the night before...

Wow what a day! It has been emotional. I sort of feel like a storm is in the forecast and it is going to have a direct hit on my family. As much as we would love to avoid the storm we are just bracing for it and seeking shelter. Let me just say we have great and precious shelter and amazingly strong and generous support! Tonight our family was lifted up in prayer in the most beautiful and kind way. We were honored to get together with our church family and pray for Grace but I am not sure there are words to describe the awesomeness of love and prayers we received tonight. It was humbling, incredibly encouraging and as close to heavenly as it gets on this earth. My heart was not in a good place this morning but tonight I will rest in the assurance that my sweet girl is covered in prayer down to every last detail! There is nothing more we could want!

As for the honoree at the big on line surgery party - She enjoyed some time at home playing with Judd and Caroline today. Tonight she had Katie (her cousin) spend the night. Katie read her the entire school yearbook - her favorite book - more than a few times. She knows everyones name and which teacher they had last year. She was a happy little girl who I think feels really loved! Sleep tight sweet girl tomorrow is a big day for you!

Get ready it's a big week...

For our family this is a big week! For Grace this is one of the biggest in her life. She is having her "big" surgery Thursday. She has had multiple surgeries in the past but this one is big for several reasons. If successful, this will improve the intelligibility of her speech where she can communicate with the average Joe. As it is now, although she has great things to say, we are really the only ones who understand what it is she is saying. I love that Judd and Caroline can understand her just as well as we can and have never asked why her words sound so different. We did our pre-op appointments yesterday and have "the plan" for what to expect but also know to expect the unexpected. Surgery is planned for Thursday morning at 9:00 will take 3 to 3 1/2 hours. They will do the trach first and then the flap and she will be in ICU 5-7 days heavily sedated. Once they wake her, we will move to the progressive care unit and there we will begin learning all the care and things that go with the trach. Once we are in that unit she will be alert and in a more private room. Our stay in that unit will be about 7 days. We are planning on our little "vacation at TCH" to be 14 days. I think by the time we get back I will even miss doing laundry which I currently despise!

This is a good thing for Grace and being objective we know that but our hearts are heavy and unsettled. Not the way I wish we felt but it is and so it goes...

An American Girl....

My little American Girl got to go to the American Girl store in Dallas! She LOVED it! We evacuated to Dallas during Ike and decided to vacation while we were there. Grace has been wanting to go to the American Gril store for her 9th Birthday (not sure why 9th since she will be celebrating her 8th in November)ever since she saw the Jon and Kate Plus 8 episode where they went. She was so excited. Thanks to Cheri I had a doll to give her and we got a little shirt for her and her doll there. We also got to sit at the desert bar and have sodas and cookies. Grace was so proud. She decided to name her doll Annie because she has red hair. My childhood friend, Debbie, went with us and it was really neat to have someone that I played dolls with sitting with me, my little girl and her doll. It was a great experience and I hope we get to go again one day.

STOP following me...

I have come to realize that I am a romantic when it comes to parenting. I have these ideas about an outing, or a trip or something fun and get excited and then it never really plays out like I had planned. I am getting better about coping with that but I do find I struggle between being frustrated and entertained by the change of plans.

Grace has been wanting to walk to and from school this week. The morning was going well and I thought I could motivate her to eat all of her breakfast by telling her when she finished she could ride her bike to school. This was well received, the pancakes were gone, she got her backpack, put on her helmet and got on her bike as if she had been doing it for years. She was excited and I grabbed the camera to document this fun trip we had planned or should I saw I had envisioned! As we got to the end of our street she stopped her bike, got off, took of her helmet, started walking and told me not to follow her, in a very sweet but stern voice. I was puzzled - I thought we were riding bikes today. She told me that she was going to walk from here and I should go home and stop following her. She got a few steps in front of me and just kept walking. She would glance back every few minutes to tell me to stop following her and go home. It was if she went from 1 st grade to 9th grade in the time it took to go down our street. I told her I was just trying to keep her safe but she said she could do it by herself and again calmly but sternly said "STOP following me". Not that she is the boss but I do want to boost her confidence and so I decided to keep my distance and foster her independence. I must say I was impressed with her. She found her way just fine and didn't get distracted along the way. I totally looked like a stalker as I followed her all the way into the school. She never knew it- since I kept my distance and hid a few times! I do love that she is confident enough to be independent but as her mommy I sort of miss being needed! I was however needed to walk the abandoned bike back home! I suppose it was good I took the camera - we did have a memorable mother daughter trip it just did go as I had envisioned.

Enjoy the pics...happy on the bike, asking me to go home and stop following her, walking by herself and then finding her abandonded bike on the corner on the way back home! Not the pictures I had envisioned but they are entertaining!

<

First Day of First Grade

She is an excited first grader. She had a great first day. She has a new communication device called a Tango that she refers to as her "laptop" and the feature she likes the most is it includes a camera. I think she may be a photographer in the making. She loves to take and look at picture. School is exciting for Grace. She thrives on the structure and she enjoys being part of a group/class. She told me today that her teacher, Ms. Tran is the best teacher she's ever had! I am not sure what they did today but she sure loved it! You may notice her picture at home is taken in Caroline's room -at her request. It seems that Grace has decided that she no longer likes her own room and wants us to move her stuff to Caroline's room. More on that later...

The debut of Grace's Blog...

Drum roll, please! This is Grace's Blog! She is super excited about having her own "website". We hope to use this as a place to communicate our journey with Grace -her unique challenges and her joyful spirit. She is scheduled to have surgery on September 25th to repair a birth defect that severely impairs her speech. This surgery offers the best possibility for her to communicate effectively and independently but it comes with risk. In order to reduce the risk of her airway being compromised with the pharyngeal flap repair she will have a tracheotomy. Not exciting but necessary and thankfully temporary! We look forward to all that God will show us through this experience and trust that He loves her even more than we do!