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I just loved Punky Brewster when I was little. Boy, am I old!! This little thing reminds me of Punky many days….
Today’s wardrobe: pink striped pants with the matching lime and pink top, pink tulle skirt, heart dress (backwards) –- and it all coordinates pretty well!
Trying to get tall man ready to sing.
The second day in St. Petersburg was filled with more tests. Blair had a language evaluation that morning, and I thought she was unbelievably cooperative, which allowed the SLP to really get a good picture of her language.
All Children’s Hospital
Blair scored within normal range on both expressive and receptive language (what she says and what she understands). This is fantastic! For two years she’s had a garbled right ear and an inappropriately aided left ear and is still doing fabulously. She was below normal 6 months ago, so she has made more than 6 months progress in that time. We’re so proud of her. Dr. Berlin was thrilled with the results and very complimentary of what we are doing with Blair. That’s not saying we don’t have work to do though!
The other thing is with her speech. Her language – what she says and understands – is coming along. Her pronunciation has not gotten much better even with hard work. They have suggested that Blair may have velopharyngeal insufficiency or VPI, which would explain her nasality and inability to say some consonants like b and p. In VPI, the soft palate is not closing properly to allow pressure to build up in the mouth to make letters like b, p, g, t, and k. If you say a word beginning with p, you will notice the buildup of air in the mouth and release to make the sound. With Blair, her air comes out of the nose for many sounds that it shouldn’t. Blair can make some of these letters, and we know that her soft palate moves; it just may not move enough. Since she substitutes g for b, it suggests that she hears the letter b but cannot make it.
A child is not tested formally for VPI until age 3, so we will address that later and subsequent treatment if she has VPI. Until then, we will continue with speech therapy.
Ronald McDonald House west – we stayed in the upper corner room above the porch. ARE YOU SAVING YOUR POP TABS FOR RMH?!
It’s not fun to hear that your child may have something else to deal with, but at this point we are thankful that a potential problem was discovered now and not later – or not at all. If she has VPI, it would explain that many of her speech issues are not hearing related. This is all great information for us, so we are happy to know it.
Penguin Jammies….some of her favorite pjs – they say “Happy Holidays.”
We also did some genetic testing. We won’t know for a while, but it’s done and we’ll at least know what we’re looking at from that standpoint. The blood draw was a not the most joyous occasion. The nurse was very good, but she looked like Blair’s Synagis nurse – she’s the one who came to the house for five months this fall/winter to give Blair two shots each time in excruciatingly slow motion. THAT was a nightmare. So Blair was on edge as soon as she saw the poor girl. It was heartbreaking to hear “Mama, help me!” as I held her still for the blood to be drawn. Thankfully the nurse was quick, and in no time Blair was talking about going home to see Gus and Buddy.
Monkeys jumping (or catapulting) on the bed! That sleep number bed is WEIRD – but it makes for good entertainment!
That’s about it for our trip. Thank you all for your prayers. We feel that many of our prayers have been answered and are so thankful that we were led to St. Petersburg. It was truly a wonderful experience with tears of joy instead of fear!
It’s that time of year again – watermelon time! This year I’m going to introduce you to a little bit of watermelon farming, similar to my Cotton Elementary series.
Watermelon season begins with planning several months before the mid-March planting time. There are plant numbers to be nailed down, plastic to be ordered, acreage to be planned, and a whole lot of other things to be done that I have no clue about!
More on the plastic later. I haven’t had a chance to get out to follow the bed knocker (I just like saying that) and plastic layer yet, but I will. Watermelons are grown on beds covered with black plastic. I’ll explain more when I have better pictures!
Watermelons are also transplanted. This means that seeds are planted in a greenhouse, and baby plants are sent to us to put in the ground. When transplanting time comes, we have certain plant delivery dates.
The plants are delivered by semis. We get them styrofoam flats. They are stored in the trailers where they are safe from the wind.
The trailers are taken to the field where the rows of plastic lay heating up the dirt under them. The flats can be removed from here as needed. Look how tiny Blair is!
Below are the baby plants in the flats on the trailer. They’re waiting to be transplanted!
This is what a flat looks like. Tiny square holes for the plants.
The tractor pulls the transplanter over the rows.
See the rows of plastic? The rows on the right are about to be filled with baby plants as the tractor makes its way this way.
The transplanter holds six people. They transplant in three rows at a time, two people per row do the transplanting. The transplanter does not go fast at all.
As the transplanter moves down the row, that big wheel with the spikes punches holes in the plastic. Water also travels down the spike and into the hole at the same time.
One of the spikes is sticking up right under the right water tank. As the transplanter moves forward the wheel turns to that the spikes push into the ground.
This is looking at the spike wheel as it comes towards us. It’s about to punch a hole right there in the shadow. (I’m risking my life for ag education here folks! Nah, not really, this thing moves slooooowly!)
A side view.
See the square hole? It’s wet all around it from the water dripping in through the spike.
And what’s Blair doing? Why punching her own holes, of course!! (She’s not supposed to be doing that.)
Each pair of transplanters takes turns in removing plants from the flat and putting them into their row where the spike punched a hole.
Taking turns…
You can see that this guy is planting one and has a couple more in his other hand.
While he is getting his ready, the other guy takes a turn.
One guy follows behind the transplanter and adjusts any baby plants that didn’t get placed well. He also swaps out the flats when they are empty.
There is storage on the side of the transplanter so that they have plenty of plants for the round. (A “round” is from one end of the row to the other.)
And there they are – the little watermelons hopefully loving their new homes!
More to come on plastic and watering… and whatever else interesting the may come along! Send me your post requests and ask questions! I’ll do my best to answer – or I’ll ask the experts….
Blair and I headed out to our local strawberry farm to pick a few strawberries Saturday. I was so glad to find out it was opening day – I was looking for something to do that didn’t involve cleaning, studying, or driving. This involved driving a few blocks, which is okay! (Since we drive a half hour to do most anything, I am no longer a fan of driving.)
Blair toted her brownie with her too.
“This one?”
Blair had to make sure they were sweet!
We made our way home with two whole buckets of beautiful strawberries.
Our next mission was to use them to entertain ourselves in the kitchen.
Exhibit A.
We had to make Brad a strawberry cake. (I think that’s why he told me the strawberry patch was open!)
Exhibit B.
This was going to be a strawberry cheesecake, but my recipe flopped. Oh well, every recipe I concoct won’t be a winner! I’ll try again another time!
Today was Blair’s ABR (auditory brain response) test in the OR at All Children’s Hospital in St. Petersburg. We came all the way down here to see Dr. Berlin’s team. We’ve been planning this trip since the fall, but this visit to Dr. Berlin has basically been two years in the making – since I talked to him that first time two years ago. Dr. Berlin has been a leading researcher in Auditory Neuropathy (also called Auditory Neuropathy Dys-synchrony – AN/AD – which better describes problem) for over 15 years – since it was discovered.
I was nervous about the procedure at first because the preop instruction nurse told me over the phone that Blair would have to be intubated. It turns out she was wrong, and Blair did great for the whole 2 hour procedure on just oxygen! (PACU was a little rough with a veeeery sleepy, crabby Blair who couldn’t keep her oxygen saturation up well enough to leave. But we eventually got out of there – after a popsicle, juice, and two chocolate ice creams!)
The fashionista wasn’t too crazy about the gown. She wanted her “heart dress back on.”
Dr. Berlin had told us before the procedure that it could take 30 minutes if they got bad results on the test and 2 hours if they got some good ones. About an hour into the procedure they came out into the waiting area and nearly gave me a heart attack. They had GOOD news though – Blair does NOT have AN in the left ear. She has a moderate to mild sensorineural loss that can be treated with a hearing aid in that ear. She already has hearing aids, so they actually boosted the gain up a little on the left one to better accommodate the loss. It was set really low before because she had been diagnosed with Auditory Neuropathy in both ears. (This AN thing is so confusing, and after two years of mommy research and dealing with it with Blair, I still myself don’t understand it totally.)
Why is it good that she doesn’t have AN in the left ear? Well, AN is characterized by bad timing in the firing of the auditory nerve, causing words to be garbled or heard with static (like tuning in an football game in an AM radio station – you hear the game but you also have a static over the announcer’s voice). AN is hard to treat with hearing aids because they amplify the static and don’t allow for better discrimination of speech. Cochlear implants are becoming the treatment of choice for these kids because even those that hear pretty well and have developed speech are suffering socially in school because due to “interference” they can’t keep up in conversations among friends. Our decision whether or not to do a cochlear implant is most of what brought us to Florida. I’ve been in touch with Dr. Berlin for two years now, and we felt it was time to have him look at Blair. I just did not feel totally good about going with a CI (and taking away her natural hearing in that ear that is implanted), and we were getting somewhat conflicting opinions at home, so God led us to the right place!
Dr. Berlin won her over from day one with his magic blow-in-the-hand-and-make-the-quarter-disappear trick. She was checking behind everyone’s ears for it! Dr. Berlin came to the RMH the day before the procedure to meet us and then he escorted us all day today. It was SO nice.
Since Blair only has AN in the right ear, we can try to work with the left (no static – yay!) and see if we can get good progress with a correctly programmed hearing aid. For the right ear, which does have AN, she can wear her hearing aid… or not – it might actually be better if she didn’t so that she can get a good clear signal from the left. We’ll have to talk more about that later.
Daddy’s girl in PACU. The nurse could not get over her paci obsession. It’s bad, really bad.
We still have some stuff to discuss and a lot of work ahead of us. We have to address the hearing aids to make sure they’re the ones she needs (at least for the left), a repair that these need for the time being, a NEW pediatric audiologist at home (which will be further from home than the one she has, but the drive will be worth it), possibly getting her an FM system for the left ear that will put sounds right in her ear from a mic we can wear, and probably more things I’m not aware of! We are thankful, thankful though for the wonderful audiology team here at All Children’s – the hospital and other staff are fabulous too – and so thankful that God led us to come here. We feel blessed to have gotten this new diagnosis and pray that the new treatment brings great developments in Blair’s speech.
Sliding later at a park on the water.
Oh goodness, dirty hands!
God is good! I’m still amazed that the original diagnosis was not completely correct – even after 3 ABRs at home. We are just so thankful that we are here and didn’t make a rush decision to implant.
I’ll follow with more details! Thanks so much for your prayers!
Loving riding on daddy’s shoulders and touching every sign!
I know you’re saying, “What is this girl’s problem?” It’s crazy, right?
I will be working away in the house or driving to school and realize that I’m talking about myself, in my head, in third person! What is my problem?! I don’t even update my Facebook status more than a couple times a month. And I'm not all that funny, so it’s not like I’m coming up with all of these clever things to say either. Maybe I just wish I could come up with great things to say, so I just try really hard – all the time. Does that make me dedicated?
Am I alone in this? Please, someone say I’m not!
Here are some things that I’ve caught myself “say” just today.
…wishes she knew a better way to clean her floors.
…has been wearing two different flip flops for three days… and the matches are in the closet.
…loves that Blair tells the moon to “come on” when we go somewhere.
…heard this today from an anonymous person (Friday, six days after springing forward): “You know, the funniest thing… the clock in my car was an hour behind.”
…made some s’mores tonight and is having flashbacks of going to high school parties and smelling like a campfire for two days.
…has got to stop eating fiber one bars.
Blair’s obsession with the moon has made me adore it as well. It sure is beautiful tonight!
…is about to take her fat butt to the beach!
…don’t know why I think that I’ll come home from vacation and some miraculous cleaning even will have happened while I was away. I always do that and get disappointed every time.
Spring break? Not with a two year old!
I’m sure there are more that I didn’t notice (or didn’t want to share with the masses), or since I was actually trying to take note of them today they might have been fewer/different. I feel like I have a 24/7 status update in my head!
**When I get 100 followers I’m going to do another giveaway – the spoon giveaway I did was a lot of fun, so I’ll have to think of another of my loves I want to share!
Sunday work means one thing… it’s WATERMELON time! Well, it’s not exactly time for the actual watermelons, but it’s gettin’ ready time! Brad and I went to Sunday school, but for part of the day today he had the guys laying plastic and working on some other things to prepare for transplanting. I’m going to try my best to do some video this year to show more about growing watermelons. I really learned a lot doing the Cotton Elementary posts, so I guess we can all go to Watermelon Elementary this year – although I’m sure many of us are already experts in eating watermelon!
We had a fire in the shop this weekend, and we were very blessed that it did not burn the shop down. Thankfully my sister-in-law’s boyfriend saw the smoke, so all the right people got notified. It could have been really bad because the fire was very close to some flammable stuff and the new (to us) sprayer! It burned up some drip supplies but didn’t do a lot of damage. Too many things lined up just right for that fire to get put out, so we know that God was watching over us on Saturday!
More watermelon posts to come!
This afternoon I finalized plans for our trip to Florida to see Dr. Berlin. Dr. Berlin has been the leading researcher in Auditory Neuropathy Dys-syncrony for quite some time now – I guess since he and colleagues discovered and named it. I’ve been in touch with him since very soon after we got Blair’s diagnosis, and he told me today that he is looking forward to seeing her “after all these years”! It really has been almost two years exactly since I first called him. I had no idea he would call me back within an hour of my leaving a message, and after talking with him, I hung up the phone with thankful tears in my eyes. He’s just such a wonderful person. I could not do Dr. Berlin justice by describing him here, but I found this interview with him that I thought was very neat and informative.
Asking me to put her bib on before she eats her ice cream. =)
The plan for Florida is to have another sedated ABR (auditory brainstem response) but in the OR this time. She will also have genetic testing because Dr. Berlin says they have found 9 genes that cause ANSD. If she has the gene, there’s no sense in waiting anymore to do the CI surgery. If she doesn’t, then we know the AN was caused by her troubles at birth. She will also have a speech evaluation. All of this will be done over a couple of days.
Blair will be the very first patient of Dr. Berlin’s new Center of Excellence for Auditory Neuropathy. I guess that’s exciting, right? To be honest, all I feel is stress at this point. I just pray that we will leave with some answers, clarity, and peace.
The big question is whether or not Blair needs a cochlear implant in order for her to be able to develop speech appropriately and function as a auditory oral individual. CIs have been successful for many AN kids, but with Blair’s amount of hearing (it’s normal with her hearing aids), it’s a tough decision to take that away from her. The surgery would take away her hearing in the ear in which the implant is placed, but she would obviously hear in that ear when wearing the CI processor, which is sort of similar to the behind the ear hearing aids she has, just bigger and without the ear mold part. The objective of doing the surgery would be to allow her access to clearer sounds, whereas right now she might be hearing sounds with static behind them or garbled. The interference could be affecting her ability to hear some sounds and prevent her from reproducing them as speech. It’s a confusing hearing loss that’s hard to understand. She’s talking; she’s just not very clear.
I guess that’s about all I know for now! Your prayers will be much appreciated in this tough time for us as parents.
