Potty Training

I have been dreading it and putting it off but I finally decided to just go for it...and start potty training Jayne.

I knew what I was getting into. Potty training is definitely a commitment. It's not something you can just start one day and then decide you don' t want to do it the next. Once you start, you have to stick with it. I knew I would have to commit to stay home for a while (to avoid any grocery store accidents) and I knew I would spend most of my day in the bathroom singing songs and reading books. What I didn't know was how long it would take or if Jayne would even be able to do it this age. I was nervous but decided I might as well try.

The first week she did pretty well--I took her to the bathroom every 30 minutes and we would read the Potty book that details every step of the way and sing the "Itsy, Bitsy Spider," "Row your Boat," "There was a little Turtle," "ABC's," etc. She loved it! Every once in a while, she would go (because we spent the majority of our day sitting there.) We cheered and yelled and clapped and made a huge deal! Then, she would get an M&M. She loves candy! We had a few accidents but it was a pretty good week. I started to notice certain times of the day that she would go and realized that she didn't need to go that often.

So, the second week, I only took her to the potty every hour. We still read the Potty Book and some of her other favorite books and sang a lot of songs. Things got worse though. I think Jayne started to get tired of me asking if she had to go, so she started growling at me and saying "No, Mama" when I asked. (It was pretty funny, but still frustrating.) Also, my hourly appointment in the bathroom was getting harder to keep. I had to leave the house and run some errands. I would try to get her to go before, but sometimes it just didn't happen. I would put her in a pull-up and I think it confused her and she had a few more accidents. She would tell me she had to go potty and then she wouldn't go. I started to get frustrated, she was getting frustrated and part of me wanted to give up.

The third week, Don found me an article online about potty training children with disabilities. It was actually very helpful. It said to take notice of the times of day they went potty and take them there at those times. It said to make it a fun experience and only stay in the bathroom for 5-7 minutes at a time because if a child is going to go potty, they will go in that time. So, I decided to stop asking Jayne so much if she had to go. I only asked her if she had to go to the bathroom around the time when I knew she usually went. We shortened our singing and story time and we continued to make it a huge deal when she did go. Things got a lot better! She started telling me she had to go potty and she would actually go! I still put her in a pull-up when I would go somewhere but she would tell me when she had to go potty and then wait until we got home.

We are on our fourth week and I am so proud of Jayne! She still wears pull-ups to bed and we still have the occasional accident but she is doing amazing! She is almost totally potty trained. It has been a long month but I am so glad we did it. I still ask her sometimes and she still growls at me. But, most of the time, she will tell me on her own or say yes if I ask her. Our little girl is growing up. I can't believe it! Way to go Jayne!


Jayne with her potty book



Elle and Easton are such a good sister and brother. They would come in and sing to her and read her books and then scream and cheer for her when she would go potty.



I soon learned that I couldn't even leave for a second to change the laundry while she sat on the potty. I would come back in to find the garbage dumped and on her head and all the toilet paper unrolled. Funny Jayne!



She loves her new princess and Minnie Mouse underwear and often undresses and dresses herself. This is how she came out one day. We LOVE this little girl!

Home from the hospital...at last!

After spending 6 days in the hospital with Jayne, there really is no place like home...

We have definitely had our share of sickness lately. It all started a couple of weeks ago when Jayne got a nasty stomach bug that had her throwing up like crazy. Of course it just happened to be the very day that Don and I left for a weekend getaway to Vegas with friends. Our sweet niece, Natalie, had all three kids and had to deal with throw up too. She is amazing! Jayne was perfectly healthy and happy when we left, but about 3 hours later, we got the call that she had thrown up. We almost turned right around and came home but we kept thinking it was something she ate because she had no other signs of sickness. Natalie insisted she was fine and told us to stay. When I found out she threw up about 6 more times that day, I started checking flights to fly home the next morning. It was hard to really relax and enjoy Beatles LOVE when I couldn't stop thinking about Jayne and how hard it must be for Natalie. But, when I called the next morning, Natalie said she seemed a lot better and wasn't throwing up and told us to stay. Even though we were gone only a couple of days, we were anxious to get back to our kids and to rescue Natalie.

We got back Sunday and it is a good thing because it all spiraled downhill from there. Jayne wasn't throwing up anymore but was still not really herself and now it was Easton who had a fever and started throwing up. Tuesday was Easton's 5th birthday and he was still not feeling well. I felt so bad for him. I tried to make him birthday pancakes and he didn't even want to eat. He just laid on the couch. We took him into the doctor and found out he had strep throat. At least that is an easy fix with some antibiotics. He was pretty bummed we had to cancel his party and was really concerned that he wouldn't turn five if we didn't celebrate. I assured him that he would. He is such a sweet boy. Then, that night Don started throwing up and although Jayne wasn't throwing up anymore, she still wasn't herself. Wednesday came and everyone seemed to be doing better. We had rescheduled Easton's party for Thursday and thought we were in the clear. He felt great and had a really fun time with his friends at his Star Wars Birthday party. (More on that later.)

Thursday night, Jayne got a fever. We gave her Tylenol and she seemed happier before bed. I checked her oxygen with the pulse oximeter and it was 96% so I thought maybe it was just from being in the sun at swim lessons. Then at 5:30 am Friday morning, she woke up crying. Don and I both went in and she had a high fever and her oxygen was reading 67%. I didn't believe it at first and kept checking it. How could it go that low so fast? We gave her Tylenol, gave her a bath and then I called the doctor on call. He told us that we needed to get her to the emergency room fast and that we should call an ambulance. Jayne wasn't acting as sick as her oxygen showed though so we were confused and wondered if our pulse oximeter wasn't working. Don's parents came to stay with the kids and we just took her ourselves knowing that there wouldn't be traffic and we could get her there just as fast. The Tylenol must have kicked in because she was pointing to trees on the way there and waving. We got to the emergency room and they checked her oxygen and took her right back. It was reading 72% and it should be mid to high 90's. After a chest x-ray and a swab to figure out what virus it was, they checked her in to the hospital. She started to get worse as the day went on and by Saturday night, they took her to the PICU because she was requiring 6 litres of oxygen and had to go on high flow. It was stressful, to say the least. I was worried about Jayne, feeling bad that I wasn't there with Elle and Easton, exhausted from being at the hospital and not eating or sleeping, Don had left because he was sick and throwing up and I was starting to feel sick myself. I felt awful but I had to go home and sleep. I stayed with her Friday night but you don't get much sleep when they come in every 2 hours. I knew she was in good hands with someone by her bed the whole time in the PICU, but I worried that Jayne would be sad that I wasn't there. That was definitely the low point. I came home and went right to bed but worried the whole night. I got up the next morning, saw Elle and Easton and left to go back to the hospital. Sleep definitely does wonders! Don and I both felt a lot better that day. Don and the kids came to visit that afternoon. Happy Father's Day Don! What a way to celebrate! (He really is an amazing dad!) Luckily, Jayne started to do a lot better and got to move back to a normal room Sunday night. They finally figured out it was Human Metapneumo virus (HMPV) and said that it was a really aggressive virus. As the days went by, she slowly recovered and required less oxygen. We just had to wait it out and give her supportive care as she fought off the virus. Monday was Elle's 8th birthday and I'm not going to lie, I woke up and I cried. I was pretty sad that I wasn't there for Elle when she woke up. I wanted to make her birthday pancakes like we do every year. I wanted to give her a big hug and tell her how happy I am that she's ours. I just wanted to be home with all my kids. Thankfully, Diane and Tami came and sat with Jayne later that day so that I could break away for a couple of hours and go to Elle's special 8th Birthday party we planned at the Lion House. Elle loved it and I was so happy I got to be there with her. By Tuesday, Jayne was acting more like herself and was stir crazy. She was tired of sitting in a crib or chair all day long. She wanted to move around and explore but had too many wires attached to go very far. It was hard to keep her busy. We watched a lot of Strawberry Shortcake, Signing Time and Backyardigans.

Wednesday night, I finally convinced them to let us take her home. They didn't want to let us until she was stable on .5 litres of oxygen but I think the doctors could tell we were done being there. We were told to keep her on 1 litre of oxygen, suction her nose out and check in with the doctor every few days to check her stats. Easy...just let us get home!

Today was our first day home and Jayne is so happy! She was able to sleep all night long without interruption, she played with her babies, read books, rode her little trike down the driveway and loved being with Elle and Easton. You wouldn't know she was ever sick, except for the long trail of tubing that follows her everywhere and the hum of the oxygen machine running constantly.

I tend to worry a lot about Jayne's development and how I am going to get her to talk. But, right now, all I care about is that she is healthy and she is home. The couple of times I did come home to shower and repack my bag, I didn't like walking by Jayne's room knowing she wasn't there. I missed hearing Jayne's little sounds during family prayer, as if she was saying it, and then clapping at the end. I missed hearing a cupboard door slam and then wondering what she was into now. I missed tripping over babies, purses and toys scattered around the house. Our home will never be home without Jayne. She is ours and I am SO glad we are all together again!


In the PICU



Watching movies



She loves her blankie and babies!

Starting to Walk!

Jayne has finally starting to take some steps!!! And you'll never guess what got her to try...

Jayne LOVES music! She insists on having music on in the car and will request "Belle" (Beauty and the Beast) every time. She loves when we sing silly songs with motions and she giggles and claps. She loves to dance and will move her body back and forth or wave her arms around. It is adorable! But the other day, when she asked for music and we started to dance, instead of just waving her arms, she stood up and walked a few steps. I couldn't believe it! She fell, laughed, got back up again and walked a few more steps. It was the cutest thing ever! We were all so excited! Jayne was having a blast with Elle and Easton and I didn't want the moment to end so we kept on "dancing" for as long as she wanted to! She was so proud of herself and I couldn't stop smiling and cheering my little girl on. I guess she thinks that dancing is walking, like when we do "Ring around the rosy." We're going to go with it and do a lot more booty shakin' at our house. After feeling pretty discouraged lately, this was a definite victory! We may have found the right motivation to get Jayne walking...our little girl loves to dance!!!

A little bit discouraged...

I'm a little bit discouraged...I have accepted the fact that Jayne may not be on the same time line for reaching milestones as my other kids. I knew she wouldn't be walking by the time she was one. For some reason though, I put this idea in my head that Jayne would walk by the time she was two. I had heard somewhere that two was the average for kids with Down Syndrome to walk so I thought it was a reasonable goal. Jayne turned two and she wasn't walking. So then I thought it would happen for sure in the next month or two. Nope. Her therapists say she's close. But she's been "close" for a while now. She has the strength. She has the balance. It's all a matter of her deciding she really wants to. In other words--finding the right motivation. But, how do you motivate a two year old? A sweet, cautious, adorable, stubborn two year old? She's perfectly content scooting around on her bum or walking along furniture to get places.

I know it will come...eventually. But the wondering and waiting is sometimes hard. And I can't help but wonder if motivation is really the issue. The thought that maybe there's more I should be doing keeps creeping into my head. Maybe I'm missing something. I try to work with her and encourage her whenever I can. (We play Ring-around-the-rosy, walk with a hula hoop or stuffed animal while I hold the other side, bounce on a stability ball for more core strength and balance, and have plenty of toys she can push while walking.) But I have two other kids, a husband and a household that I need to take care of too. I do my best. But what if that's not enough?

I know I shouldn't be so anxious because I do love that she has stayed a baby longer. I love that she still lets me hold and cuddle her. I love playing with her and want to enjoy every minute because I know it will go fast. I know that I will look back 2 years from now and long for these days. But I can't wait for that victory when Jayne walks across the room. I can't wait to see her face when she realizes she is doing it on her own. And, I can't wait for that feeling of relief knowing that our efforts do make a difference. We need those little victories. They give us hope. It is in those moments that I feel like we really did make it to Italy.
I mean, we absolutely love Holland. Who wouldn't? It is a beautiful place. But it's nice to visit Italy sometimes too.

Our little girl

A few weeks ago, I was talking to a friend at the gym and she was asking about Jayne. She asked about Jayne's health and wondered if she was walking yet. I told her that Jayne wasn't walking yet but was close. Then she asked, "So, is it just a challenge everyday?" I said, "Honestly, I am just so thankful for Jayne everyday." It just came out and it is the truth. I am SO thankful for Jayne every day. She is such a blessing to our family and I am grateful for all that she has taught us and continues to teach us. I am grateful for the joy that she brings into our home and her sweet nature. I am grateful for her hugs and kisses and little laugh. She keeps us grounded, reminds us of what really matters and helps us to enjoy even the little things. Of course it is still hard at times. There are definitely still days when I wonder what I'm doing and how I will ever be able to help Jayne enough. There are still moments when I want to cry because her differences have just been made very clear. Sometimes it is hard...

But when I think of Jayne, I don't think of her as a challenge. I truly do think of her as an incredible blessing for all of us and all that know her. When Jayne was first born, I had a hard time accepting the fact that she has Down Syndrome. Every time I thought about it, my eyes would fill up with tears. Now, almost two years later, I still get all teary eyed when I think about Jayne-- but now, it is not because I am sad but because of how far we've come and how grateful we are for her.

The moment Jayne was born, I thought that our life would never be the same because we had a child with Down Syndrome. I was right...but now I know that's not a bad thing. Jayne is just Jayne and she is beautiful! We love our little girl!

(This video has been circulating and I just love it so I had to share)

Jayne gets Pneumonia

Two days after Elle got her tonsils out, we had a little scare...

Jayne started having a low grade fever on a Monday, 100-101 degrees. She was getting her 4th molar in and kept chewing on her hand and didn't have any other symptoms of being sick, so I assumed it was from teething. The week went on and she continued to have a fever off and on but it was still low so I kept giving her Motrin when she needed it. She started to get more irritable though and wasn't acting like herself. Thursday night, the day after Elle got her tonsils out, Jayne was up all night long. She kept crying and was inconsolable. She didn't want her binky, a bottle, a cup, her blanket and it didn't even help when we held her. She kept chewing her hand so I still thought she was teething. I didn't think it could be her ears because she just got tubes a month earlier.

The next morning, I took her in to the doctor that was on call because mine was out of town. I thought he would tell me it was just teething and send me home but thought I should at least check. He listened to her lungs, checked her oxygen in her blood and then looked at me and said, "You know what's coming, don't you?" I honestly had no idea. Jayne has been really healthy. He said that her lungs didn't sound good and her oxygen levels were way too low. He said to call Don because Jayne had to go by ambulance to Primary Children's Hospital and we needed someone to come get Elle and Easton. I was shocked and really scared! I had no idea she was so sick. She wasn't coughing a lot and wasn't showing any signs of having problems breathing. She was crying a lot but I assumed it was from being so tired. I have no way of checking her oxygen levels so I had no idea how low they were. When she would calm down though, they were dipping into the 70's when they should be in the high 90's. Elle and Easton knew something was wrong and Elle looked at me and asked, "Is Jayne going to die?" It broke my heart. I told her that Jayne was going to be ok. She just needed to get some help from doctors to get healthy again. Poor Elle has seen way too much death in her short life. Don's sister, Tami, came and picked up the kids and Don came to the doctor's office. They insisted Jayne go by ambulance so she could stay hooked up to oxygen so I rode with her and Don followed right behind.

After a few hours in the emergency room, they checked us in to the hospital, took some x-rays and moved us up to a room. Jayne stayed hooked up to oxygen and had an IV for fluids. The doctors finally came and told us that Jayne had viral pneumonia caused by a common summer cold virus--Parainfluenza 3. They said that most people that catch this virus would just get a runny nose but it got in Jayne's lungs and turned into Pnuemonia. The unfortunate thing about it being viral is that it can't be treated with antibiotics. We just had to do supportive care--keep suctioning her nose and throat out and keep her on oxygen and wait it out. Jayne had bacterial pneumonia last winter but it was completely different. She had a really high fever in the 103-104's and a bad cough. They gave her an antibiotic and she improved quickly within a couple of days. Because her fever wasn't high and she didn't have a bad cough this time, I never would have guessed it was pneumonia. I feel so bad for poor Jayne. She just couldn't breathe well and I didn't know it. Jayne has been so healthy that I guess it hasn't sunk in just how careful we need to be. The nurse told us that kids with Down Syndrome are 62 times more likely to have respiratory infections and get pneumonia. I had no idea!

Jayne had to stay at the hospital until Sunday. I stayed with her and Don stayed with Elle and Easton. They came and visited both days. The nurses came in every couple of hours to check her vitals, suction her out if she needed it and kept trying to decrease the amount of oxygen she needed. She started out on 2 Liters and by Sunday, they were finally able to decrease it to 1/4 Liter. We got to take her home but just had to keep her hooked up to oxygen until she could keep her levels above 90% in her blood. Jayne didn't have to come home with oxygen when she was born so it was a new experience for us. She was such a trooper though with a tube stuck to her face and up her nose. She was so cute crawling all over the house with a tube trailing behind her. We had to keep her on it for a week at home but she is doing great now! Thanks to my friend Heather for letting us borrow her Pulse Oximeter to check Jayne's oxygen levels in her blood so we didn't have to keep going to the doctor every day. It is so nice to have friends who have been through this and can help. The whole experience scared us enough that we bought our own pulse Oximeter. Now I check Jayne all the time, just to make sure. Things took a turn for the worse so quickly and I don't want that to happen again!!!

Jayne looking at a book at the hospital

She is so cute!!!

Jayne was so happy to see Elle and Easton when they came. I kept showing her pictures of them that I have in my purse. She loves her brother and sister.

Elle was so sweet with Jayne when they came to visit. She wanted to hold her right away and didn't want to put her down.