February Photo-A-Day

I love participating in this Photo-A-Day challenge that Chantelle Ellem posts each month on her blog, Fat Mum Slim. You can read all about how to play here.

Here are my photos from the February challenge, all taken on iPhone...

1. FORK - in the pathway
2. PATTERN - mosaic floor tile
3. SOMETHING BEGINNING WITH 'E' - our section of the resort, esmeralda
4. HOPE - really hoping she'll lose her fear of deeper-than-her water and learn to swim without the life jacket

5. SOMETHING YOU SMELLED - mmmmm...cappuccino
6. SOFT - looks prickly, but these needly branches are actually quite soft
7. YOUR NAME - written in the sand
8. SOMETHING ORANGE - her sweet little off the shoulder bathing suit

9. GUILTY PLEASURE - i won't admit how many of these i ate at breakfast today ;-)
10. 3 O'CLOCK - feeding time for taylor
11. ENTRANCE - where we had supper
12. WHERE YOU ATE LUNCH - at the snack bar by the beach

13. WALKING - in her sleepers, blankie under arm, puppy suitcase in tow, walking on the tarmac to the plane that will take us home
14. LOVE IS... - these two darlings, and this shot was totally unprompted
15. INSIDE YOUR FRIDGE - after two weeks away i seriously need to get groceries
16. PERFECT - amazing kit kat cake my dear friend made

17. IN YOUR HAND - my cuppa tea
18. SOMETHING YOU DON'T LIKE - getting marissa up and ready for school
19. I AM... - picking her up from the bus
20. WHERE YOU STOOD - at sobey's

21. FULL - having lunch at five guys will certainly make you feel that way
22. MAKES YOU SMILE - don't know what came over her, but she up and decided to vacuum
23. A WORD - playing with one of taylor's new ipad apps
24. CLOUD - pretty pink swooshy sunset clouds

25. ON YOUR BEDSIDE TABLE - the usual stuff, only thing missing is my iphone which i'm using to take this picture
26. QUIET - sleeping soundly after surgery
27. PLAYING - the way she's playing you'd never know she just had surgery
28. UPSIDE DOWN - marissa likes to pour in the cheese

Join me for the March challenge! Below is the list of prompts, for more details you can click here.

Tympanomastoidectomy

We made it to the hospital this morning with no hiccups thank goodness. Francis thoroughly enjoyed the fact that I had to get up at 5:30am. I didn't share that enthusiasm! Here's my cutie after we arrived at Day Surgery and got her changed, sporting her Supergirl g-tube pad.

Dr. Brookes had told me I could anticipate two hours minimum for the surgery, but could very likely be three. Francis and I were pretty on edge by the time 4 hours were up and the board said she was still in surgery. Holy stressful wait batman. Ended up being nearly 4.5 hours. When he finally came to the waiting room to talk to us he said that everything went very well. Some of the bones of hearing were completely eroded away, and some he had to remove to get access to the cholesteatoma. He also had to cut around the back of her ear and shave some bone for access as well. This was all expected, no surprises. He said in behind her eardrum was "packed to the gills" with skin. It's actually pretty gross to think about. He was able to remove all the skin successfully with the exception of a thin layer over one particular area of bone. He explained that if he tried to peel that layer of skin back and somehow damaged a specific area underneath it, that Taylor would be left completely deaf in that ear, forever. So he intentionally left that skin behind. Firstly, because he has to go back in six months from now anyways to remove any new skin that could potentially grow back. Second, he wants to have one of his colleagues in on that surgery to assist in removing the skin in that one tricky spot. He said if he were to give a percentage of how much skin he left behind, it would be like 0.1% which sounds pretty good to me.

Two shots before surgery, and two after recovery

Taylor was in and out of sleep for the next couple of hours. But when her eyes were open they were as beautiful as ever, she even had a wee sweet smile or two.

I had ordered a special Supergirl backpack last month for Taylor's feeding bag and pump, and what fabulous timing, it arrived in the mail yesterday. It's perfect, couldn't be happier! It's made by Jessica at TuFe Boutique, you can find her on Facebook here.

The main concern after this type of surgery, especially how long her teeny body was under anaesthetic, is nausea and vomiting. Taylor was being hydrated through IV and we were given the go ahead to try a feed at 2 o'clock. Normally I run a g-tube feed of 240mL over 20 minutes, but we decided to run it over an hour to err on the side of caution. The whole feed ran without incident, but as I was getting some water to flush the tube, she threw up pretty much the entire feed. Poor little darlin, she didn't even cry or fuss. So we decided to let her settle and try again at 5 o'clock, and we tried half the normal size feed, mixed with a little water, again over an hour. It was only running for about 10 minutes before she started throwing up. So we stopped again. For the next couple hours Taylor was pretty upset and throwing up whatever was left in her which wasn't much so it was more heaving than anything, which is awful. And she coughed/vomited up some blood. Some of which was quite dark (old) and a result of her being intubated during surgery. But there was a little bit of bright red blood. ENT was paged and because the ear and throat are connected, and Taylor was coughing/heaving so hard, they weren't concerned or surprised that there was a bit of blood. And there wasn't any more after that thank goodness. The charge nurse ordered to stop all feeds for now and just keep the IV fluids running for hydration. At 8:20 she got all her meds with a little water and managed to keep those down. She hasn't had any more formula, we're going to let her rest and settle through the night with IV hydration and try again in the morning. Patients having this type of surgery are usually discharged post op, but Dr. Brookes said that we could overnight if we wanted to due to the fact that Taylor isn't a typical kiddo. My gut did not feel good about going home today, and I'm so glad I asked to stay. If all this happened at home I would have been beside myself.

The evening nurse took the dressing off and cleaned Taylor up a bit. I thought Taylor might feel a bit better to get the hair off her face so I put pigtails in and she's been sleeping soundly ever since. Some of her hair is stuck to her head from blood along the incision, so hopefully the nurse can help with that in the morning to get it unstuck so that it doesn't pull. I'm pretty bagged, so I'm calling it a night and hope that my little love gets some good rest too. Fingers crossed that Taylor will be able to keep some formula down in the morning!

Cholesteatoma

Taylor has had several hearing tests done with Audiology over the past four years, and they have always indicated fluid in her right ear. It was never really causing any problems so we were told we didn't need to do anything about it, that it would naturally resolve itself at some point. However, at a regular appointment with her pediatrician, he noticed signs of quite a bad ear infection in her right ear. He prescribed antibiotics and saw her afterwards to follow up. No change. In fact, after three rounds of antibiotics there was no change. So he referred us back to ENT (ear, nose and throat doctor) at the Children's because he didn't know what else he could do for Taylor. So at our ENT appointment, Dr. Brookes suggested at this point that we go ahead with Myringotomy surgery (ear tube placement) to resolve the drainage and persistent ear infection issues.

Taylor went in for that surgery on November 19th. It's a very quick surgery, only 5 minutes, so I wasn't waiting long at all before Dr. Brookes came out to see me when he was done. He told me that the left ear went fine, he placed the ear tube in it, but that he ran into a surprise in the right ear. When he made the cut in the eardrum he discovered that there was no fluid behind it, and no infection either. He discovered a cholesteatoma, which is a skin growth that occurs in an abnormal location, the middle ear behind the eardrum. Hers is congenital, it's been growing since before birth. Cholesteatomas often take the form of a cyst or pouch that sheds layers of old skin that builds up inside the ear. Over time, the cholesteatoma can increase in size and destroy the surrounding delicate bones of the middle ear. Hearing loss, dizziness, and facial muscle paralysis are rare but can result from continued cholesteatoma growth. Dr. Brookes told me that because it will continue to grow (and could eventually affect the brain and cause meningitis), she would need a further surgery to remove it, called a tympanomastoidectomy. This surgery is about 3 hours long. Not exactly what I was hoping to hear when the doctor came to meet me after what was supposed to be a straightforward ear tube placement. But at the same time, are we ever grateful that this was discovered now.

Taylor's file at the Children's (whoa!) and heading off to surgery for ear tube placement

Next up was a CT scan which was required to get a clearer picture of how big the cholesteatoma is and exactly where it is. For the scan they put her into this sleeping bag type thing, zipped and buckled her up then vacuumed all the air out so that she was sucked in tight and couldn't move. She did awesome, she was still long enough for the picture that they didn't have to sedate her. When we met with Dr. Brookes a week after the scan, he told us that the mass has filled up all the empty space of the middle ear behind the ear drum, and continues on back behind the ear. There is already erosion present which means that some of the bones of hearing have been damaged. What came as a surprise at this appointment was finding out that she will need a second surgery about 6 months after the first one. Cholesteatomas have a nasty habit of growing back, so they need to go back in 6 months later to see if there's more skin growing, and if so, to remove it. At this second surgery is when they typically do reconstruction, as bones will be removed in the initial surgery. This all sounds pretty complicated and intricate.

Taylor the morning of her CT scan, love the bedhead!

This video is an excellent description of a cholesteatoma and the surgery (tympanomastoidectomy). You can watch it here.

Taylor goes in for her surgery first thing tomorrow morning. I will post an update following the surgery. Stay tuned and please keep our little supergirl in your prayers.

Punta Cana

We've been home for a week now, but I'm still savouring the memories of our trip to the Dominican. Two weeks, our whole family, on a tropical vacation. It was sooooo lovely...

We stayed at the Bahia Principe Esmerelda. The grounds were beautiful, the resort very nice. Good food, great shows. I can never get enough of palm trees, turquoise water and tropical flowers. The beaches in the Dominican are the nicest we've ever seen. Beautiful, clean white sand, crystal clear water. Sigh!

Marissa had lots of fun. Unfortunately the Kids Club wasn't what we had hoped for. It had so much potential, the list of activities through the week were awesome, but there was hardly ever any kids there. Marissa was disappointed, she really wanted to have friends to play with. She did meet two very sweet girls from Toronto the same age as her and Taylor but they only had a few days together before they headed home. Marissa still managed to enjoy herself though. She spent lots of time in the pool with Daddy. She loved hunting for coconuts and little geckos. It was the mission of choice anytime we were walking around the grounds! In fact she collected 29 baby coconuts that had fallen to the ground and was determined to bring them home. We prepared her for the fact that they would likely be taken away at the airport by security, but they didn't, so she was super excited to bring them home. The tops are now getting some mold on them, so I'm not sure how that's going to go over when I tell her it's time to throw them out!! There was a spectacular water park on the property that Marissa enjoyed lots of time at, with Kids Club a couple times, and us a couple of times. Bizarre rules wouldn't let parents on the water slides, so she had to do that by herself. She loved going to the show at night, the highlight being the Michael Jackson show which was fantastic! I now have myself a little Michael Jackson fan, so much in fact that she wants to have a Michael Jackson birthday party next month! There was also a nice little mini golf course that she played at a few times. One night she got to dress up as one of Snow White's seven dwarfs to be part of the evening kids show. She made a very cute little dwarf! I think the most fun I witnessed Marissa have was playing and jumping in the waves on the beach. It still puts a big smile on my face to remember the pure joy on her face out there.

We were so happy to have Taylor with us on our winter vacation this year. The last winter holiday she came with us was three years ago, just before she started the Ketogenic Diet. Once she was on that there was no way we could bring her because we needed access to a kitchen, grocery store and a scale to weigh by the gram all the ingredients to prepare her meals. When she stopped eating and got her feeding tube, the possibility of going away with her was there because we only needed to be able to prepare ketogenic formula every night, and we could do that without a kitchen. But she wasn't stable enough for us to be comfortable taking her to the Caribbean. She's been so stable for a while now that we decided this winter the time was right. Travel days were challenging with a wheelchair and all the extra stuff we need to bring for her, but it was soooo worth it. She did so well and handled the heat with no trouble. Taylor loves the pool, so it was a joy to see her in the water every day for two weeks. She was so happy. So many smiles on her face during her pool time. And she loved being in the section where the jets were and feeling them push her. Her swimava neck ring gives her complete freedom to move her body in any direction it wants, it must be such a great feeling for her, the only time she has that complete freedom.

We spent much of our time by the pool every day, and enjoyed our down time. We did however take one excursion. It was on that day that Taylor got her first kiss from a boy, a 5 year old dolphin named Alex. Such a special memory! It was at Dolphin Explorer in Punta Cana. We went on the Funtastic option, where everyone in the group got a dolphin kiss, a dance, and lots of slippery touches. It was in the ocean, and there was a platform that we all stood along. Marissa was unexpectedly spooked by the water and all the little fish swimming around us that she completely refused to participate and sat on the dock above us the whole time. I'm still sad that she missed the special opportunity, especially because of her love of dolphins, but she did manage to touch Alex once at the very end. And she did experience the welcome kiss that we each got from a sea lion!

One morning we had one of the resort photographers take some photos of us and he captured some really nice shots...

Francis and I celebrated our 11th wedding anniversary while we were away. The family we met from Toronto had hired a babysitter one night from the resort and told us how wonderful she was, so they introduced us to her (Yuleyda from Butler Services) and she met the girls, and we had her watch the girls on our anniversary so that we could go out for dinner just the two of us. We went to the restaurant Don Pablo over in the Ambar section of the resort which is adults only and had a lovely dinner. Was nice to get out for the evening alone. Yuleyda (pronounced "Joolayda") was a sweetheart, she spoke English very well and loved the girls.

Enjoying our drink of choice, "Bahama Mama"

You can check out a few more pics on my Instagram feed here. Feels like we're still slowly settling in back home. Taylor's back on her regular routine of therapy/school during the week. Marissa went back to school on Tuesday. The laundry is nearly done. But the vacation memories are still fresh. Feeling happy and very, very grateful.