Our 5th daughter, Meagan, was diagnosed with severe Congenital Hydrocephalus at our 20 week ultrasound. Her story has propelled our family on a new journey. I hope to keep track of Meagan's story here to help other parents who may face a Hydrocephalus diagnosis for their child, and to celebrate Meagan's life.
With Meagan passing the 2 year mark, part of the "process" is of course that yearly well check. Typically it would be such a pain going back into the doctor, etc...but for Meagan, I actually look forward to her well checks. As crazy as it sounds, it's nice to do something "regular" with her for once as far as doctors go.
We saw Dr. B and she was surprised at how awesome Meagan is looking these days. She was happy with her overall health. I, too, was very happy with Miss Meagan because for the first time, yes, the FIRST time ever at the Pediatrician office, we made it through an appointment without ANY screaming! I am not counting vaccinations because let's face it - we all almost scream for that stuff! But typically Meagan walks in and just starts crying, arching, and screaming at the mere sight of a doctor's office. I was ready for it.. so I made sure to carry her in this time instead of putting her in her stroller - I snuggled her a lot -and told her over and over it was a "no owie" appointment. And you know what? She didn't scream or cry at all! Not even when getting her ears checked (which is a huge improvement). Granted, most of the time when we go to a doctor office, it is for a surgery, emergency, or because she is sick and really not feeling well - however she even screams when she has to accompany me to MY doctor ... so I was very impressed. She did get a "pouty sad lip" a few times - but I saw it coming and simply rubbed her belly and told her it was "no owie" and that Dr. B just had to check her out. The sad lip stayed but never morphed into her typical screaming routine.
Besides rocking the behavior at her 2 year check up, I was happy to learn that after Dr. B evaluated her weight and height together and told me Meagan has just reached the 1% line. Yay! This may seem silly but Meagan fell off a cliff on that chart last year and never recovered. Since her g-tube she has been inching back towards it, and at her check up, she was finally back on the curve for the first time since 11 months old. She has been holding steady now at 19 pounds for a few months so hopefully in the next few months we see some more growth. Other than going back for her flu shot in the next few weeks, we are DONE at the Pediatrician until 6 months from now unless she becomes ill before then.
Meagan has been working very hard with Speech Therapy as of late. We see her trying and trying to communicate so her SLP, T, has really been "upping" her goals. He has been emphasizing words with two syllables with her so we can move her communication skills forward and push her a little. T made her four "flash cards" with four two syllable words - Cowboy, Hot Dog, Baseball and Ice Cream. We work on them a little here and there to keep her hearing the repetition. Just tonight she repeated the first word (ice cream) for the first time back to me - of course, as my style goes, I grabbed my camera and she did do it a few more times. The first time she just wanted to snuggle daddy but in the second video you will clearly hear "ice cream" from her little voice. What is hilarious to me is that even though she is solely tube fed, the one food she will not just "taste" but actually take in her mouth and swallow is....ice cream. Hey, I don't blame her. Ice cream is pretty darn good.
Meagan certainly is unique and has a lot of personality. She is also hilarious. Quite literally, she will make you laugh harder than almost anyone can. She is a ham. Especially in front of the camera.(maybe a little vain.. but who can blame her). She will sit and watch herself for several minutes - probably hours if I let her... and make the funniest faces and sounds. I love watching this part of her personality wake up. Not only is it entertaining, but I just love to see her reactions when people are obviously tickled at her little sense of humor.
We still havne't done a party for her yet. It has been a crazy busy few weeks with school events for the older girls, getting my other daughter's birthday party finished, and a lot of dance events going on... but now that all of that has settled down, we may try to plan something special for her to celebrate "2." Someone just asked me the other day when Meagan had to go back to the doctor - I said "her next well check..." ... they answered... "what?" Exactly. I'm really hoping these next few months are a "quiet" time for Meagan. She has had a LOT go on in her first 2 years, and especially these last 6 months. We aren't due at Neurosurgery until November, Neurology until December, and now the Pediatrician until March-ish. A few regular follow up and well checks? We will take it!
Sitting with Daddy listening to the Browns and Indians games.
Yes, we are raising the next generation of Cleveland fans.
It's amazing what another year can offer in perspective. Reading Meagan's 1st Birthday post brought back a flood of memories and emotions. I'm so thankful I wrote all of that down - it is such a blessing to be able to go back and read and dive right back into those moments. There is something healing about it - and also something helpful - so that I never forget or take for granted how far she has come and what we have all had to go through to get her here and help her thrive. However, at the conclusion of this year, what has been on my mind is notsomuch the practical things we have been through, but something more intangible.
My oldest daughter loves to read. All the girls love books, but ever since her reading skills have taken off in particular, she just cannot wait to get through another book. I love that about her. One of my favorite authors when I was younger was Roald Dahl. As soon as I realized she was ready to handle his books, I started suggesting them to her. She got The BFG, Matilda, and a few of the other titles to read. What I loved about his books when I was little was often times, the sheer absurdity of his humor and story lines His characters and their tales were so crazy and funny that it was a great escape from reality and made for a never-ending and never boring adventure through the imagination. I was recently reading through some of Roald Dahl's quotes ...one in particular stuck out to me:
“And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.”
- Roald Dahl
It struck a chord with me because I have often thought of what got us to this point. What gave us the courage to trust in God and let things happen as they were meant to happen? How were we able to stand up as her parents and be both strong enough and naive enough at the same time to balance bringing a child like Meagan into the world when almost every known professional we had seen warned us to the contrary? And then upon reading that quote - I realized that God had not made us any stronger or smarter than anyone else. But what He had done is reminded me that only HE knows where the true joyous surprises in our lives hide. And only by me listening would I have His guidance to learn all the unlikely places in my life that would unlock the best secrets yet to come.
Silly girl
It did take a huge leap of faith - but I am forever grateful we trusted. I'm forever grateful that I listened to God and unlocked all those unlikely places that allowed Meagan to come into our lives. Each day I am reminded of the rewards for exploring our unlikely places in our life..... when she smiles, or tries something new, or even just sleeps peacefully in my arms. And even on the bad days, I want to scream back to those doctors that even those harder moments don't make unlikely places undesirable. Tough? Sure. But not undesirable. Because what the naysayers miss is that in those moments, is where the magic that happens... when we are allowed to be there... entrusted to hold her, kiss her, and tell her good days will come again. That is the magic we could have missed had we not listened to our hearts.
Meagan has had quite an adventurous year. Mostly good! But also a lot of procedures, surgeries and hospital stays - that pattern isn't too much different from her first year of life. We expect and hope that to spread out here in the near future, but even so, she has made some incredible strides this year. She is starting to make a lot of new sounds - babbles, consonant sounds, several short words (mama, dada, eat, more, please, play) and signing others. She has started to initiate communication for the first time - instead of copying our sounds or signs, she is using a few of them like Da-du! (Thank you) at appropriate times, showing us she is starting to understand the concept of how to use language on her own. She is stronger physically - she is extremely close to being an independent sitter finally. She can sit against anyone or the couch for a while - and if balanced correctly can hold a sit on her own for several seconds before flopping over. She is happy - always showing joy and delight and her sisters, her environment, or new voices in the room from visiting friends or family. One thing she has been struggling with as of late is trying to work on her hands and/or knees in her PT sessions. It just isn't happening. The girl doesn't like weight through her arms or hands. We have tried about every trick in the book and she just doesn't want to do it. She is motivated, though, so we just decided to put it on the back burner for down the road and do things she DOES like to do. So we have continued working on sitting and trying to straighten out her lower back (it is getting a bit curved because of the way she tries to hold herself in a sitting position)....which brings us to yesterday ....
Watching some morning cartoons with the big girls
Saturday, we had a scare with our dog. He got into four.. yes... FOUR bags of nice chocolate I had purchased for an upcoming event. He became very ill and had to go to the emergency vet hospital (If it's not the kids or a trip with Meagan... it's the dog.. go figure...). Luckily the vets were able to stabilize and help him and after a one night stay he was able to return home. As soon as he came home Meagan was immediately interested in where he was. She has turned herself around in circles on the floor before or moved herself to the side to grab something she wants or to see better...but not yesterday. Yesterday, she looked over in Dudley's direction and just 'inch wormed' her way right over to him..when he would get up, she would continue to follow him around the room! We were cracking up as she shimmied this way and that -the whole time trying her hardest not to use her arms (stubborn kid!) and trying to keep up with the poor dog (who probably just wanted some rest away from the kids after his long night!)
Watch out world - Meagan is 2!
Meagan has found a way, in a most unlikely manner, to move herself forward. I think this speaks volumes about her attitude and her year to come. She is ready to go - ready to unlock all her secrets and see what the year has in store for her. As I look back on Meagan's 2nd year, I know that she has never lost sight of the magic. And because of my thoughts lately....maybe this will be the year we go back and visit those old doctors - to remind them that sometimes, just sometimes, unlikely places aren't undesirable...but show us the true joy we never knew we were missing.
Happy 2nd Birthday Meagan Theresa Gianna!! May this year be full of accomplishments and happiness. May you have health and comfort as you continue to move forward in your journey. And when there are those inevitable bumps in the road, don't fret. I will be right there to help you find your magic again.....Because you taught me how long ago.
There is just something about pets, if you are a pet owner, that is special. Moreso, there is something extra special about dogs. I'm a "dog person"....always have been. I was raised around dogs and continued that tradition with our dog when Brian and I got married. Our dog has been a huge part of our family and still continues to be - and I thought it was about time to tell his story.
I will never forget the day we went to pick out Dudley. We had been married about 7 months and I was almost 6 months pregnant with Reilly. Things had been great but I really missed having that furry friend around. I was so used to having a dog in the home and I had talked to Brian about getting one. I was waffling back and forth between what type of breed - I had grown up with Schnauzers, but was also open to a much larger dog. We waffled back and forth through the summer and into the Fall. One day, as I realized Reilly would soon be arriving in a little over 3 months, I decided we needed a dog. Right then. No exceptions.
Those who know me wouldn't be surprised. I tend to do a lot... all at the same time. It seems crazy on the outside, but, it's just how I'm wired. So one day after mulling over "should we or shouldn't we" I decided to just do it. I got out the paper and looked in the ads at pets for sale. I decided I would choose a few breeders and Brian could pick which he wanted to go check out. I circled a Labrador breeder for the large breed (for obvious family reasons), and also circled a Shih Tzu breeder for the small dog. I decided on the Shih Tzu for the small breed option because they were non shedding and one of the only small breeds known to be good with children inately. Our Schnauzers had been great, but, my mom had worked with them a LOT to make them the great family dogs they were. With a new baby on the way, I wanted a breed that *mostly* already had that bred in their nature. I brought the paper to Brian one day when he was getting some work done at home (he was extremely busy at the time - working a straight 65 days literally up until Reilly was born - like coming home at 3am, showering, and going back to work straight days) .... and asked him to pick - we were getting a dog.
It may not have been his choice to get a dog at that moment, but, being the loving husband he is, he looked at me, and probably knew there was no choice. He looked over both ads and said "Well, if I'm going to get a dog, I want to get a 'man dog' so we are going to the Lab breeder." I was fine with that - deep down although I loved growing up with a small breed and may want one again eventually I really wanted to try out a large breed. I said "ok" and we were off that weekend to the breeder.
We drove out into the farm country of Virginia (which is incredibly beautiful) and eventually pulled down a one lane gravel road. We found the small white farm house tucked up on the left hill from the road and drove into the driveway. When we parked, the owner came to meet us - she was extremely nice and friendly and offered to show us the puppies. She explained a little of what they did with breeding. It wasn't their sole business but also they had done it enough to do it well and make sure all their dogs were certified and checked for health and family lines. She introduced us to the two females they had on the property - the grandmother (who was retired and just lived as the family pet at that time), and the mother of the litter, who had only had 2 previous litters and this would be her last. The owner explained they were partnered with a local high quality hunting lab breeder who studded out a few of his males to breeders like she and her husband who only did a few litters per dog over the years. She said this ensures good dogs with good family lines, but also offers more affordable family pets since they aren't bred from both certified hunting dogs at the expensive breeder. The owner then walked us in to the house and showed us the litter. They were incredibly cute. I was immediately sold on getting a lab - now which one would be the next decision.
As we watched the little balls of yellow fur and skin rolls hobble around the kitchen and play with each other, the owner pulled out all the parents and grandparents AKC papers and let us have copies. They said if we wanted to play with the puppies a bit we could and if we found one we liked, they would mark it for us. Once the puppy received its final vet check in a few weeks, we would be welcome to come back, pay the rest of the fee and take the puppy home. Brian and I watched the puppies for a while - we saw the crazy hyper ones... we saw the ones hiding from us by the cabinets. We agreed to each pick one - I would pick a girl and he would pick a boy - and then when we came back we would decide which we would take home. I picked a little girl who seemed sweet - just playful enough but also subdued enough to just love a cuddle or a scratch on the back. As I continued to watch the litter as they were let outside to play, one little puppy caught my attention. He was a boy - and he was constantly getting picked on. The other puppies would chase him, or jump on his back and nip at him playfully... but instead of playing back, this little pup would just run over to Brian and go to his lap as if he were saying "help!" It was the cutest thing but also I felt bad for the little bullied pup! And of course - after observing for a while, you can take a guess which one Brian chose to mark. Yep - the little picked on puppy. We left happy with our choices and made plans to return in a few weeks.
The few weeks went by fairly quickly. In that time, I felt like my own belly had expanded quite a bit. I had carried Reilly quite small for a while but suddenly my belly seemed to "pop." I was concerned when we went back that they would not sell us a puppy for fear once the baby came, we may give the puppy away. I can completely understand that - as many people once kids come along suddenly "forget" how it is to care for their beloved dogs and unfortunately give them away - and I didn't want the owners to be nervous about selling a pup to us. So the day we went back to the farm, it was cold - thankfully. I put on some fitted jeans leaving the top open, and made sure to wear layers - on the very top sporting a big sweatshirt that sagged on me. Really, at a glance, you wouldn't even know I was pregnant - let alone past the 6 month mark. "Perfect!" I thought.. and off we went.
When we arrived back at the farm, I knew in my heart which puppy we were going to take home. I had made and continued to make most of the household decisions - as a lot of wives do - and with no insult to Brian - it was just how we functioned as a couple. Being that I knew I would be ok with any dog, I decided to let Brian decide on his own which puppy he wanted - since I was the "dog person" it was important to me he chose so he would have the one he wanted to encourage him to bond with it more. Of course, he chose the little male picked on puppy we had marked a few weeks before. I was fine with that - we gave the couple the second half of the payment - got his AKC papers, and off we went with our new family addition!
I remember the whole way home the poor pup cried. And whined. And was so sad and pathetic! Knowing we were getting a big dog, Brian and I had decided on several "big dog" names.... but on that ride home, it was apparent that none of the names we had chosen would fit this little guy. It just wasn't his personality. So when we got home, we mulled over several other boy dog names... and finally one stuck out to us that just seemed "right" ..... Dudley it was.
Dudley the week we brought him home
Over the years, Dudley has been an amazing dog. He has been loyal, sweet, loving, and everything you ever imagine in that "TV Lab" for your own lab to be. He has also been protective when need be, though - when strangers come to the door or something "isn't right" he knows it and bears those teeth and protects us. I have no doubt he would absolutely act on that protection if need be - which is a great balance to have in a family pet. As time has gone on and we have added 1, 2, 3, 4 and now 5 children, Dudley has been a trooper through it all. Silently laying on his own when we have been incredibly busy with new babies - and gently nudging us when he needs that extra pet or love saying "hey, I'm still here." He is wonderful with the girls - they play vet with the poor guy all the time - and he just lays there and takes it.
Dudley and Reilly. They have grown up together.
In the last few years, we have had a few health scares with Dudley. First was a snake bite a few years back - we were playing fetch with him and as he was going for a ball deep in the vines up in the back of our yard, a Copperhead snake whisked out and bit him right inside his lip. Luckily we were home at the time and due to his excellent vet and prompt medical care and anti-venom, he came out ok with only a little droop left at the site of the bite. More recently, we saw Dudley start to lose weight. It was odd because as anyone can tell you with a Lab - if you leave food out, they will eat it. Immediately. And will do so constantly if you so allow. Meaning, if we let him, Dudley would just eat constantly. We could tell right away if he was getting slightly overfed - you would see his nice waistline start to disappear and he would start looking overweight. But this time, he wasn't looking that way. No matter how much he ate, or what treats he had, he still looked skinny - and was even losing weight. I knew something wasn't right so I took him in. Long story short, after an x-ray and some blood work, the vet was very concerned he was losing his liver and its function - the x-ray showed the usable liver tissue was starting to be much less than normal and she was concerned this would continue. The good news was she felt like we had recognized the problem early - so with some medicine, blood checks ever 6 months, and a lot of prayers, she hoped we could prolong the process, buying us a lot more 'usable' years with our buddy.
I'm happy to say that, so far, the vet's plan has worked. The change in Dudley is amazing since he has started his supplements, medication, and basically us allowing him to eat whenever he wants. He is maintaining his weight and his energy is up. Although his face is getting whiter by the day, he seems to be in good health and his liver is holding steady as of right now. Thank God.
With good ol' Dudley approaching his 9th birthday, I do see his signs of aging increasing. He takes a lot longer to get up now. When I come downstairs in the mornings, he doesn't jump up immediately at the sight of me, but rather looks at me waiting to see if I will come to him to give him a little morning pet. When he does get up he creaks and groans and he takes a few minutes to actually straighten his legs. Once he is up, though, he is still loving to grab his bone and go chase it in the yard.. just for not as long as he used to :)
One thing that has been different is Meagan's interaction with her dog. As visual and communicative as Meagan is, and as interested in things as she is, she has never quite "noticed" Dudley. He, however has always been interested in her. He could be right next to her and she would basically ignore him. Even the nights he would hover over her in her seat when a seizure came on, or the days he would lay next to her on her play blanket, she didn't bat an eyelash in his direction. Dudley would persist though - nosing her when she would lay blankly in her bouncy seat as a tiny newborn....laying silently in her presence just after a hospital stay or surgery. Matter of fact, there have been times Dudley would just suddenly get up and go stand in front of Meagan with his tail straight and his head down - almost like he was watching - and sure enough not a few minutes later, Meagan would have a seizure. He is by no means a "seizure dog" but it seems he just "knew."
Suddenly, in the last week, Meagan seems to notice Dudley. This has quite literally happened out of nowhere and it seems now she can't get enough of him. She watches him walk around - she notices when he lays next to her - and she is even starting to say "D! D!" as he walks by... it's hilarious to see her so interested in him now when for almost 2 years she could have cared less.
Meagan clapping for Dudley. Why, I'm not sure. LOL
Just the other night Brian and I were relaxing with some junk TV on before we went up to bed. Dudley was laying on the floor and Meagan next to him - for the first time ever I noticed her inch towards him. She was patting him with her hands.. and then pulling back.. at the touch of that straight fur. She would roll near him and hug him.. then roll away. She would try to make the "d" sound again and then pat his back again. I had to stop rolling the camera once she found his tail because if she grabbed it I was worried he would be surprised and turn around too quickly - but for those few minutes I caught her on camera, it was such a sweet sight. I think Dudley must understand her so much more than even some of us do. There is just 'something' about a kid and her dog - something unspoken yet something all of us can feel as tangible emotion. I hope Dudley sticks around a while - I think Meagan would really like that. And I know as long as he's around, Dudley will continue to be a friend to her - watching out for her and giving her love. That pathetic little picked on puppy turned out to be the perfect first member of our family - the perfect silent guardian that God knew Meagan would need.
Today Meagan had her follow up with Dr. F. It was a pretty routine visit but we did get some 'better' information about some of the things that Meagan deals with. First of course we talked about Meagan's development. No real surprises there - Dr. F was extremely happy with her. He said there is no point, in his eyes, measuring where "Meagan is" compared to other 2 year old children. He said although she was still working on sitting (which she was also working on a year ago summer), he wasn't concerned. He said we haven't seen any regression and that is really what would concern him. Dr. F said Meagan is Meagan and she will do what she does in her own time. I was fine with that statement!
Baby girl doing so good opening her eyes more now!
On to her seizures - Meagan has had seizures almost all of her (almost) 2 years of life, so they are nothing new to us. Luckily, we have found a medication and dosage that seems to 98% control her seizure activity. When she is very tired, or hot, or post surgery, I do see a few crop up, but, for the most part, her seizure activity seems very low. This is a huge improvement from last year where she would have several as a daily occurrence. He did up her dose a tiny bit only because she had a few breakthrough seizures this last week - but it shouldn't be that much of a difference to negatively effect her.. and I'm sure those few were due to her recent surgery or her brain trying to make new connections for her eyes. She has been fine this week so far, so hopefully this new dose keeps those breakthroughs at bay. He did say he was able to tell from her last few EEGs and an analysis of her behaviors that it seems her epileptic activity is mostly in her temporal lobe and possibly some frontal lobe. It made total sense to me because Meagan's behaviors during a seizure are very textbook "temporal lobe" when I read about it. It described almost exactly what she does during an episode. He said the temporal lobe showed several epileptic discharges and also severe slowing of the brain waves. That coupled with noted slowing and discharges in the frontal lobe area offers some clue as to the origination of her seizure activity. This doesn't change anything we are currently doing to manage her seizures - it was just another piece of the puzzle that was made a bit clearer at this time. We have been blessed so far (knock on wood) to never have a seizure where she can't breathe or gets into emergency distress, so for now, we do not need a rescue med at home. Last year Meagan had a few episodes of Todd's Paralysis, but, otherwise we are very lucky that her breathing and vital functions have not been affected by any of her seizures.
The last order of business for the appointment was taking a look at Meagan's general health. We know from bloodwork done in the NICU that Meagan's microarray was normal - ie: no blaring genetic abnormality that seems to have caused her Hydro. Dr. F noticed that Meagan didn't have any recent bloodwork done, that is, while she is healthy. She has plenty of blood draws over the last 6 months, but all were when she was really sick or pre-surgery. He was looking through things and discussing Meagan's weight gain - which has mostly been good since her g-tube- but she was down a pound prompting Dr. F to ask if I had ever had Meagan's Thyroid numbers re-checked. I said "re-checked?" He said yes - last year she had two separate blood draws where her thyroid numbers were way off. I told him no one had ever told me that. Could have been useful information especially with all her growth and weight issues! He agreed and wants us to go in one week to get a "healthy" blood draw so he can re-look at those numbers. If they are still wacky, he wants her to see an endocrinologist just to manage how it is or could affect her growth down the road. It's not a complete surprise, however, since we did note on her last MRI that her pituitary gland looked damaged or crowded... so we will see what the bloodwork shows in a few weeks and go from there. The two blood draws had been from two separate times - one at the hospital,and one at the old Neurology practice where we used to go - and neither place had ever contacted us with the abnormal results. I was very glad Dr. F was thorough and decided to recheck her numbers - the results could be very useful in our monitoring of Meagan's growth in the next few years.
As for anything else, she is pretty stable right now. She does have a random spot in the middle of her head puffing up a little this week - it's not as squishy as her forehead bulge last month, but not as hard as bone. So I'm confused if this is just weird bone growth, skull shifting, or fluid pushing out from between bones. She is still acting like herself, especially for being less than a week post-op, and is still tolerating feeds fine. Meagan other than having a new lump and bump on her ever so lumpy and bumpy head, doesn't seem bothered by it one bit - so I'm just going to watch and see. Dr. F seemed fine with that too. He did recommend to possibly call Dr. R by week's end if she still had it - but - I know Meagan. And I know when something really bothers her - and I also know that the kid has been through the ringer lately with doctors, appointments, surgeries, and therapies. Being that she is fine in every other way, we are just going to watch it and see if it changes any more or goes down. If I feel at all it is something bothersome or worrisome, or if her behavior changes,then of course Dr. R will be the first person I call. I swear - always keeping us on our toes with her puffs and bumps and growth! This girl.....
Meagan's "puff" ... I've come to the conclusion she just likes to puff out
random parts of her head every so many weeks
So all in all we left the follow up today with a little new information, a reaffirmation of a lot of old information (thanks to my super Hydro mom gurus), and a good feeling about the appointment. Meagan did give Dr. F "five" when she first came in before she buried herself in my shoulder for the remainder of the appointment, so that's an improvement (she normally screams as soon as we go through the door and doesn't stop). We don't have to go back until December when he wants to see her again and compare her blood work with how she is doing and how her weight is trending. It was great to leave an appointment in good spirits. Meagan seemed happy to leave too - after hiding in my shoulder almost the whole time, she let out a resounding "BYE BYE!" as we walked out of the office. I don't blame ya Megs - I don't blame ya! :)
This picture is from a few weeks ago, but I just love it. She's such a silly girl.
I know a while back I had talked about switching eye doctors for Meagan. Her old eye doctor was very nice, but I felt not a good fit for us. After looking around and talking to a few other people, they recommended seeing Dr. G - who is also a pediatric ophthalmologist/surgeon. Our initial appointment with him was already a huge step forward.
As you know, Meagan completely freaks out at any doctor's office - she knows all too well now what it "could" mean ... so I was prepared for her to scream through her appointment as she had for months with our old eye doctor. When Dr. G came in, Meagan stuck out her lip, which is what she does before she freaks out. He noticed though and instead of approaching her, kept his distance. He talked to her for a bit and then went through his drawer until he held up a toy that she seemed interested in... at that time, he came a little closer, and she was actually ok. He did the eye exam with fairly minimal fussing from Meagan - something we had not seen yet at the other office. I knew we had made a good choice in switching. While her old eye doctor was very nice, he never seemed "comfortable" with Meagan -- if you are a parent, you know kids can read us like a book even without us saying anything... our emotions and moods are easily picked up by their intuitive selves and if it's negative, it only gets worse. I really think Meagan could tell he was not comfy with her and that's why she always screamed with him. Dr. G, however, had an air of confidence yet caution about him, and likewise, I think Meagan could pick up on that. Because of that, she had a great exam and we finally got clear answers about Meagan's vision.
Dr. G said yes, he would have also tried glasses and patching - but after thoroughly examining her vision he said her nerves and muscles actually look ok. There was no "structural" reason her eyes were floating to the side and one of them vertically. He said instead, he believes she is having a disconnect between her brain and eyes as far as messaging goes. Dr. G said her brain was not processing her vision correctly. He explained that even though the structures looked ok, for some reason, probably due to the pressure from her Hydro, the brain was not "turning on" her eyes at the same time. He said although Meagan can "see" her brain was only registering one eye at a time - so when she would look at me, she was only actually seeing me with one eye...which meant the other one was "off".. hence the turning and moving upwards. He said because of this, it may also be causing a lot of her head tilt we have been seeing lately (she has been tilting her head a lot to the right when looking at things). He said since we had done the glasses and patching to try and "trick" the eyes into turning on in non-invasive ways, it was time for surgery. I knew it was a probability, and after 8 months to a year of battling glasses and patches, I was on board with it.
Almost a year with glasses and patching didn't fix the issue
Dr. G said what he would try to do is manipulate Meagan's eye muscles so that perhaps it would stimulate new brain signals to register both eyes at the same time so her vision would be clearer and so one eye wasn't always turned "off" ... He said her left eye would need a lot more work since it also had vertical movement so the surgery on that eye would be a little more involved.
A good picture of Meagan's right eye issues
Surgery day was yesterday. We checked in early and of course had the typical wait for being called back, vitals, prep and all the stuff that goes on before surgery. We were blessed with VERY nice nurses who were very sweet with Meagan and basically left her alone when they could so she wouldn't be so upset. Finally Dr. G came in, explained again what he was going to do and asked if I had any questions. Within a few minutes after that, the OR nurse came to get Meagan - she let me walk her to the OR doors and then I handed her off.
I decided to walk around the hospital for a bit to pass time. I got a cup of coffee and then went to the gift shop to just look around. Yes, Meagan didn't "need" another stuffed animal, but, she has had a special treat after every surgery so I decided to look around for something small. After about 40 minutes, I got a call from the OR nurse. I assumed she was going to tell me Meagan was finished, but instead she was just calling to update me. She said Meagan had done well so far and they were still working. I thought it was sweet she called to let me know how Megs was doing.
I found a little something for Meagan and headed back up to her room. About 30 minutes later, Dr. G walked in. He said he had just finished and she was doing great. He said of course since it was a brain issue they were trying to "tweak" there is no guarantee if the surgery would work, but he was hopeful it was a success. He said her eyes would be red for about 3 weeks but she could go back to her normal activities. He did say to keep Tylenol or Motrin in her for the first 2-3 days as her pain level could be fairly intense during that time. He said after about 3 months we will be able to tell at a follow up eye exam if her eyes were functioning together and go from there. The hope is that is the case - that both eyes will be picked up so she is getting vision from both at the same time. Worst case scenerio - she could go back to seeing with just one eye at a time and require follow up surgeries. But, in the long run, it's no worse than before surgery as that's what her eyes were doing anyway.
Finally back in the room
Snuggles from Mama
I must admit, compared to Meagan's other surgeries, I did kind of blow off this surgery as not a "big deal." I think so far I have been proven wrong. Meagan has several friends who have had eye surgery, but for some reason she seems to really have taken it hard. She literally slept the entire day yesterday and as of 2pm today is still asleep. She is very gaggy and chokes if I even feed her 2-3 ounces of formula so I'm feeding her very spread out during the day an ounce at a time. She did attempt to open her eyes last night once, but since then has not opened them again. She is shielding her eyes from any sort of light, even dim light, and is hitting her head a lot. I assume she is just very light sensitive and also probably has a massive headache. I am also assuming alot of her nausea could be related - I know if I had my eyes worked on it would throw off my entire balance and probably make me feel sick too. I'm keeping pain meds in her still as it's quite apparent if it lapses she is extremely uncomfortable. I went ahead and cancelled my students for today because it is obvious she needs Mommy today and just needs an afternoon to lay low. This just goes to show me how unpredictable reactions to surgery may be. Nothing bad at all, but, she is obviously extremely uncomfortable and will need a few days to get back to herself.
The redness and bleeding should subside within the next 3 weeks
For a little while this afternoon when I was laying next to her, she dropped her paci. She put her hands out feeling around for it (since she won't open her eyes) and so I put her hand on it and she put it back in her mouth. She grabbed her blanket close again and started to drift off to sleep again. But before she dozed off she said "ug.... ug..." which is her word for "hug." Of course I leaned right down and gave her the biggest hug ever as she fell asleep. I'm hopeful in a few days, she will perk up a bit and I'm excited to see how the surgery potentially helps her eyes and her vision. I'm most excited though for a quiet few months with my girl! This was the LAST procedure/hospital stay/bump in the road for a while now and I'm so glad it is over. Meagan has a big birthday coming up - and it will be such a blessing to celebrate at home and know there is nothing pressing on the horizon except lots of love, lots of family time, and of course, lots of "ugs" :)
Meagan pre-surgery.
Even though I'm excited what this may do to help her vision long term, I'm going to miss her crooked little eyes. They were just "her" for so long.
Well the past few weeks have been quite insane for miss Meagan. All was going well and back to normal - the kids were about to start school and Meagan was on a great streak. Feeling good, happy, and just a doll to be around. She was scheduled for her Gbutton surgery last Friday and so we had a follow up with Dr. B (GI) that Tuesday before.
We got to the office fairly early in the morning - with all 5 kids in tow. We got called back and shortly after Dr. B came in to see Meagan. He is one of the few doctors with whom Meagan doesn't freak out (the other being Dr. R of course). He went over her last few months with us re: her eating and her tube feeds..etc. She had finally come out of the depths of the "flatline" where she had been for over a year with her weight and actually had a rise on the chart. It was awesome! She weighed in at just under 20 pounds and Dr. B was very pleased with her progress. He said to continue her feeding plan as she seemed to tolerate it well and was gaining well and we would re-evaluate in about 3-4 months. He said her gbutton surgery for Friday was still the plan and he would see us then.
The ride home was fairly uneventful. The older girls started school the next morning so there was the usual "afternoon slump" as they realized this was the last day home for the summer. Suddenly I hear from the back "Mom pull over! Mom it's so gross!!" I knew it was Kaitlin's voice.... and I knew it must mean puke. (She does not do puke - even talking about it makes her feel sick herself). I asked her who threw up - she said "Mom Meagan just threw up everywhere!" Oh great I thought. This is NOT what we need!
As soon as we got home of course I pulled Meagan out of her seat. And ...it...was...everywhere. The poor thing had gotten sick all over herself, the seat, and managed to completely soak every crevice of her carseat and the straps. Ugh. People tell me all the time "Oh after 5 kids you must not even care about that stuff anymore.." Um, no. I do not do puke .... it is disgusting!! Nonetheless, I of course laid Meagan on a towel - cleaned out the car and her seat the best I could quickly and left them to dry while I took her straight into the bathtub. I put her in and she just sat there. "That's weird" I thought. No matter her mood, Meagan usually always splashes in the bathtub. I figured she was just tired. So I took her out. No crying. No screaming. That was weird too - if anything she always screamed and flailed when I took her out of the bath (because then she would naturally realize it was over and want back in!). Nothing. So I laid her on the bed and got a diaper out to change her... and bam. All. Over. My. Bed. No joke. Meagan has really never thrown up in almost 2 years of her life - so I knew something was up.
Of course over the next several hours as she continued to projectile vomit, I kept waiting for the fever, or the throwing up to subside... or some sign that it was the usual "tummy bug" but nothing changed and she kept vomiting extremely forcefully. With the lack of symptoms and lack of ability to keep anything down, we decided to take Meagan in to the ER to get her some fluids.
When we arrived, they of course checked her shunt having forceful vomiting and no other symptoms. They also ran blood work and assured us they checked every common cause and couldn't find anything. Luckily her shunt looked fine, but unfortunately that left us with no answers as to why she was so sick. Finally later that night, the vomiting subsided and she fell asleep. We gave her some pedialyte through her tube and she held it down ok - so we were sent home. I thought perhaps we had some little bug and for some reason hadn't had other symptoms. I got home early that morning and put her to bed. She slept well all night. When she awoke in the morning, she immediately cried and fussed - and then got sick all over my bed. I knew something wasn't right.
I called our Pediatrician who said of course to bring her in - that wasn't characteristic of a stomach bug to go away and then come back so badly. I was worried about Meagan becoming dehydrated again. So off to the Pediatrician we went. Of course it was a little crazy as my older girls started school that same morning (of course) but we made it to the appointment. The Pediatrician gave Meagan a quick exam and noticed her throat looked horribly gross. She checked her records from Children's and noticed they hadn't done a strep test. Of course. Maura also gets sick with strep. Within minutes, the Pediatrician came back and said her test was positive quickly. We decided to give Meagan antibiotic shots instead of liquid medication since she still wasn't holding down anything so the nurse came in and gave her the shots. I called Dr. B (GI) and informed him of the situation. He decided to move her gbutton surgery to the following Friday so her stomach had time to recover and heal from being so, so sick.
The next few days were up and down with Meagan. She seemed better, but then we had another day and night of forceful vomiting. Then she wasn't tolerating her formula as she had been so I started to mix it with pedialyte and give her little bits at a time. After only 5 days Meagan had lost 2 pounds but at least she was getting better. She started improving and getting back to her old self. Laughing, playing and being silly. Her feeds were still hit or miss, but at least "my Meagan" was back on track.
This Friday came quickly and we were excited to finally get her PEG changed to the gbutton. It would be nice to not have the tube dangling from her belly anymore. The older 3 girls were in school, but Maura (3) ended up having to come with me that day. It was a long day of waiting, watching, and sitting at Children's, but after all was said and done, Meagans gbutton surgery was finished and was a success. She did amazingly well in recovery and we got to go home right away! They sent us out the door with her bag of new supplies (her supply company isn't sending extensions until next week) and that was that!
Already wanting to "help" me give her meds
Out the door..with syringe and new toy in hand. Silly girl.
So far Meagan is tolerating her gbutton well. The biggest issue has been her learning that when I approach her belly, I'm just hooking up her feed. With her PEG, it meant cleaning her skin, which she hated...so each day that goes by, she is getting more and more used to me hooking up her extension for feedings and squirming less and less. We are already back to her usual feeding schedule and she is tolerating them well. The "funny" thing that has happened since Friday is that she is back on to wanting a bottle at night. She had given them up a while back, but suddenly on Friday said "Baba" ... I decided to give her a bottle to see if that's what she wanted - and sure enough, she sucked it down. So we are continuing her tube feeds during the day and letting her have a bottle to fall asleep at night.
Enjoying the ease of her new button!
This was the last stretch of a long line of hospital stays, surgeries, and such....one last thing will be eye surgery in a few weeks. We found out some good and useful new information about her vision and how her eyes are physically working, which I will detail in a later post...but it helped her eye surgeon realize exactly what he needs to do to try and help her see better and how to help her vision in the long term. Once her eye surgery is over a few weeks from now, hopefully that is it for a while! It's been a long stretch for Miss Meagan ever since February, so we are looking forward to checking this last surgery off her list and having several months of "nothing" after being so busy! God is so good, and He shows us everyday in my amazing little Megs.
It is no mystery the three older girls (and Maura for that matter) have been bitten by the Irish dancing bug. I can't say I'm surprised nor disappointed. The bug got me too when I was about 12. I took a class and immediately loved it. After many years of competition, performance, and "just for fun," I finally hung up my shoes after two broken bones. It is neat to see my girls enjoying the sport that brought such joy to my upbringing and I have loved seeing how they each evolve in to their own unique styles and strengths.
Since the three girls 'caught on' fairly quickly, we have planned a few feis' (competitions) around family trips this summer to let them dance and have fun while also seeing out of town family and friends. To get ready for their competitions, and really just to pass time any day in our house, there is Irish music playing and three little girls dancing around, helping each other keep time and learn steps. Before starting every step, they count off.... "5..6...7..and off you go!" This has been happening day after day, week after week. They love to practice and they just do it on their own. I will be cooking dinner and hear "5....6...7...and off you go!" Lock this away in your mind for the end of this story. :)
We took a trip to DC at the end of July. The girls had a competition at the end of the week so we went up early to spend time with family and friends. The two older girls were treated to a 4 hour, 6 mile hike in the Shenandoah mountains with their hero Uncle Nick (my brother). They climbed over rock quarries, up steep trails and made it to the top to enjoy a picnic lunch admiring the Virginia mountains.
Kaitlin hitched a ride at times
We got to spend almost everyday with my sweet nephew and every evening with my sister in law whom the girls adore. We got to talk, laugh, and catch up with my parents, and Brian's parents. We saw some of the cousins at the competition at week's end and aunts and uncles.
We spent the days letting the girls explore the area where they had first lived - from venturing in to downtown DC to explore the Smithsonians, to taking a boat out of Old Town Alexandria, to staying near Nanny and Pop Pop's house and going on train rides and carousel rides at the local park. We were also able to go visit old friends including the children (who are now young adults!) I used to babysit, very close high school friends, and also former coworkers of mine at the pub who treated us to a great lunch at their new eatery. The busy week wound down and before we knew it, Saturday was already upon us.
The girls' competition was Sunday, so we decided to stay in the hotel Saturday night to make things easier for leaving the next day. As it turns out, the Feis offered Mass right there in the hotel, so we decided to attend vigil Mass as a family so that Sunday we could get on the road after the conmpetition. As soon as we took our seats at Mass, I knew Meagan wasn't going to last. She had been through an extremely busy week and was very off schedule. I could tell she was in one of those moods where I would have to hold her and walk around with her, so I scooped her up and stepped outside to let her calm down.
Of course, being that a Feis was the next day, there were dancers everywhere practicing and mosaics of Irish music melting together dancing across our ears as we walked the hallway outside Mass. When Meagah heard the music, she suddenly stopped fussing. She began listening. Her eyes became active and I could tell she was excited and interested. I was fine with that - at least she wasn't fussing...and I continued to walk and rock her as the dancers around us practiced and jumped about.
Suddenly, Meagan looked up and put her hand on her pacifier. She popped it out, and just as matter of factly looked at me and said very clearly "Fi...... Si.... Off go!" I jumped back a minute (figuratively speaking) thinking to myself.."Did I just hear what I think I heard?" While Meagan has a few words like "Mama," "Dada," "Byebye," etc... she has never said them with 'purpose'... she will babble and rattle them off like a pattern, but she has never used them in an appropriate situation as a way of communicating. I took Meagans hand, placed it on my chest and drummed out the rhythm of the music.. then I leaned in and said "5...6...7.. off you go!" and before I could finish the word "Go" her little legs started going crazy!! Wiggling all over. Kicking, stretching, pounding on my arm. She was dancing!
Meagan still "dances" all the time
Over the next 20 minutes, I sat there and watched my little girl dance in my arms. Every so many minutes she would pop that pacifier out and say "Fi...Si... off go!" And immediately following her own count off, her legs would start wiggling. And kicking. And stretching.
It was such a great moment - to see her spontaneously show me that she IS soaking in everything we do around her. The poor kid is dragged to 5 dance classes a week, surrounded by 4 little girls jumping and kicking and practicing all the time....and she gets it. Meagan was saying in that moment..."Mom... I get it!"
I cannot plop Meagan down to sit and play on her own just yet - but despite that she found her own way to dance. I know this is the first of many things she will "figure out" to do in her own unique way. But that moment is something I will never forget. We have put a lot of faith on the line for Meagan - and have done so willingly and knowing God will guide us along the way. It was such a gift to see Meagan, once again, showing us she has faith in herself too. Every little moment like this is God's way of showing me Meagan is not going to sit it out. As the song says..."..and when you get the choice to sit it out, or dance... I hope you dance." And that she did.
For a week or so now, I would come to "Meagan's corner," as we call it....( her little area of our living room that has all of her toys, therapy toys and tools we use with her.)...and her blocks would be a total mess. I know for a fact that Maura sometimes helps herself to Meagan's toys, and when I see this I gently remind her to please use the other toys in the playroom so we can keep all of Meagan's things together in one space. I would lay Meagan to play for a few minutes while I would fold laundry, or quickly put away dishes....Maura would typically come over to play with her but by the time I would go pick Meagan back up to go upstairs, I would notice blocks everywhere all over the floor. Again I would ask Maura to please not throw the blocks around so we can keep Meagan's stuff together. Maura kept saying day after day "It's not me!"
Well tonight, the power of technology has exonerated poor Maura. I heard a digging sound in Meagan's block bin... next thing I knew the bugger had hurled it over her head and off the rolled anywhere from an ince to several feet from where she was laying. Ooops! I had no clue Meagan could hurl things this far. And now I know she is totally using her position in the family to already blame messes on her sisters ;) I'm on to you now Meagan!
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