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.