What is sleep anyways?

Going on day 3 of little to no sleep. I think I might be going crazy. I have solved many of the worlds problems but then I forget. Oh well! Briar is sick, coughing all night. We have a regimen (saline, humidifier, inhalers, nasal suction, mattress elevated) but it does nothing!!!!! Those extra exclamation mark are for my frustration. We are considering taking her to the doctor today but what will she do, prescribe MORE meds or admit us to the hospital... lose/lose in my eyes. By the way, incase you thought this was a theoretical explanation of sleep, it's more of a rant! So it's almost time for me to go to work. Briar has missed pretty much this entire month at daycare due to illness, and my bill keeps racking up!! I need a break from either illness or her. The thing is, I only feel this way when I am totally drained. I can't get refreshed because she is sick, if she goes to hospital (the break) I am there with her and still up all night!!! Come on, when does this end, we're talking a month of illness. I know what the problem is, I get this terrible anxiety that we are going to go to the hospital and have to stay, just like when she was born, for months. I hate it there. It smells too clean and everyone is fake nice. They always seem to pity you. I hate that.

Bye

Snowday

So it's been a few weeks I think since out last post. Not that that is too long, but with so many changes, I thought the people should be told :)

Briar had her GJ tube placement on November 30, 2010 at 2:30 pm (scheduled for 11!!!) The GI nurse was nice enough to tell us they were actually cancelling our surgery that day but because we had already left when they called, the nurse pushed it through and said "You have to do it!" I was upset but also happy, I mean they got it done, but it would have been nice to know why we were waiting for 3 1/2 hours without any explanation!! So everything went well. The called us into recovery at 3:30 pm and I stayed until 6:00 pm.... we tried everything to wake her LOL I also tried to explain to the recovery nurses but they know best, so I let them have their fun. The put a wet cloth on her face and all over her body, we did physio exercises, they out a freezie under her armpit :) we sang to her, called her name, tickled her and so on. Eventually the nurse told me to go grab some dinner, when I returned she was awake!! We were moved to our monitored room (there were three other kiddos, one being a teeny, tiny baby!!) She had a great night, but I still hate being away from her and having strangers take care of her. I called at 6 am to see if they had started her feeds at 2:30 like they were supposed to but she didn't have a gurgling tummy so no feeds. We were going on 38 hours with no food and she still wasn't hungry!! What a kid :) anyways she was able to start her feed at 9:00 am after the docs saw her. We were moved into a private room with a little pushing from me so I could have 24 sleepovers. I do love a good sleepover and we learned the whole kanye album!! Briar did really well and we were able to increase her feeds fairly quickly. However when we got to 35 mls an hour, she would vomit "coffee grinds" aka stomach fluids. It was pretty nasty. We were sent back to imaging (hot Australian doctor too) incase of the placement being off, but everything was fine. Instead the head doctor actually listened to me and allowed us to slow the dieticians plans and increase more slowly. He also said we could start solids right away and give her her laxative again (that was interesting) She is so amazing. As I finish this post weeks later, Briar is sick and just got out of the hospital for pneumonia a week ago. She is so incredibly awesome and so are all the other amazing children in my life.

We are so lucky to be parents, don't take it for granted, not for one second.

Briar gets a new tooth, while Ella is at ballet :)

It's coming soon

SANTA SILLY!! No no no, Briar's surgery. First of all let me say that I think she has a cold, but is not as sick as I thought, phew! We are getting ready and it kinda feels like having a baby again; packing my bag, making plans for Ella, calling family and keeping them in the loop. But our "baby" is almost 2, I could cry right now! 2!!! WOW, what a life we have been through already. It makes me think of the first few months. I was oblivious to anyone but Briar and myself. Just two girls hanging out 12 hours a day (and lots of sleepovers). I remember her first surgery, I let go of her hand and the doctor pulled her bed away. I said "Take care of my baby," just like in the movies! But I meant it, please be safe with her, she doesn't understand what is happening. Now I am prepared and I understand the risks, benefits and all that other stuff.... but am I really ready? I don't know...

This time her surgery is not a difficult one, in fact they could do it on an adult in like 30 minutes and you would be discharged that day. The difference is that Briar needs to be asleep and will take more time to heal. It is difficult for her to fight infection. I just need it to be over with. I can feel the emotion coming through already. The letting her go with a stranger, the waiting with all the worried parents (you don't know what they are going through, Briar's last roomie was an 18 year old who had 8 hour back surgery), the recovery room (just to say hi!) and the stay (constant monitoring, learning new terms and procedures, sick babies). I guess I am ready. Ready for my daughter to feel good about eating, to feel good about riding in a vehicle, to be able to play and not have to sit for hours. So I guess this is it...

Some good news coming our way...

So most of you are aware that we got the best news ever today. Briar's surgery has been scheduled for November 30!!! I just thought I would let everyone else know that we are so excited (Daddy is very nervous). So over the next few weeks we will be mentally preparing for Briar to go through surgery since it's been almost a year and half since her last surgery. When she had surgery the first time, we didn't really have time to think it through too much, we just went for it. I am going to hate the waiting but we know the end result will change Briar's life. So our schedule looks kinda like:
November 29, 2010 Rest and relax. I took the day off with Briar so we can cry a little and kiss a .
November 30, 2010 9:30 register at the clinic
11:30 surgery... this is when we play the waiting room game where all the people wait for a doctor to come and tell them their child is in recovery. Briar will be there for an hour or so. Last time I got to go in the recovery area which was surreal to sit with all the people that had just come out of surgery. Briar had been on oxygen for about 5 weeks and it was kinda weird to see her with all the wires and tubes.
2:00 If everything goes well we should go to the post/surgery recovery wing or ward *not too sure as she has never had surgery at Sick Kids. We were able to skip NICU when she had her PDA Ligation and go right to the floor. That was very nice. After surgery I am hoping to stay with Briar for the week, but I don't know the rules at Sick Kids, so I may be in a hotel or with friends.
December 1, 2010 Charles and I will take a class on how to use and clean Briar's insertion site and her GJ tube. I already read the booklet they home with us, but I know I will have million questions. Thankfully, my BFF is a nurse :) JES!!
If everything goes very well, we should be out by Friday or Saturday. I know you will all be with us on that special day and I'll update everyone on the progress.
Any questions, don't hesitate to ask, we love learning and sharing what we have learned with friends and family. Thanks again, PEACE!!!

Merry Christmas!

Okay, so many good things to report, it feels unreal to have this much good news.
First of all, Briar has been working so hard on holding her head up. I posted a video on FB and will post it here of her on the wingbo swing (we are thinking of purchasing for Christmas family, if anyone is interested in going in on it!!) We are so proud of you Miss B!! Also she has started to roll from her back to one side, thinking she is going to make it all the way over very soon, but since she can't hold her head up, I can't see her being very happy on her tummy hehehe. Briar has finally found her hands. She can't keep them apart, they are attached at all times now :) Ans the best news of all! We met with a dietitian, a nurse practitioner and Dr. Kanani, a pediatrician at Sick Kids GI Clinic today. After asking all the history, talking about her calorie intake and swallow study, they decided she is a great candidate for a GJ Tube!!!! We are soooo happy!!! At first I thought they weren't going to recommend it because they were coming up with all these ideas to supplement her diet. When they asked what "I" wanted, it was my breaking point and I started to cry. I told them we were really hoping to get the tube because I was struggling with all the regurge. I often cry, as you probably know when driving with Briar in the van because I can't help her when she vomits. So after my melt down, they were very kind and compassionate. They said that of course we can go ahead with the tube placement but they had other ideas to try, like new meds and a swallow study (which I thought we had had, but nope) while waiting for a surgery date. So that is that, a mother and her child celebrating another surgery (not an unnecessary one like circumcision, hehehehe)

I think I will have some wine, get a good sleep and think about all the amazing pictures I am going to take of Valerie Running (Minnie) at her wedding tomorrow :)
Much love peeps, Ashley

PS CONGRATS CASEY MAMA!! I DON'T KNOW WHAT GENDER YOU HAD BUT WE ARE ALL THINKING OF YOU!!!!!!!!!!!!!!!!

GI!!!

Great news all around, but let's start with the best news first! So I have been on the phone the past week with Cathy Parker from the GI clinic. She was the liaison between ourselves and Dr. Zlotkin (who is now a VP or something, not seeing patients)So anyways, she called me back last week and said she got a note from general surgery asking about Briar having an upper GI/swallow study (BLECH). Briar had one a week of two after birth to try to figure out why she was regurgitating so much. Cathy said that General Surg wanted to do another one to access her fundoplication. Basically, I let Cathy know that I strongly disagreed, and the best part was she also disagreed. She said as far as she was concerned, Briar needed to have the GJ tube ASAP! I was feeling a little down but not defeated (NEVER!) So I basically said we would come in no problem to have a swallow study, but it needed to be sooner than later.
Cathy left a message tonight on the phone saying that she spoke with Dr. Zlotkon, and they were both in agreeance that a swallow study isn't necessary ***Briar is throwing up a I type this*** I was hooting and howling when I listened to the message, I just kept going "YES!!!" Charles was looking at my funny, saying "WHAT?!?!?" HAHAHA I was so excited. So the plan is for Cathy to send the forms over to surgery, and we wait for a call. They need to access her first but we are one step closer to getting our little dolly at a healthy weight, stopping the regurgitation and hopefully helping her body get the energy it needs!!!!!!! :):):):):):):):):):):):):):):):):)

We also had Briar's 6 month review at Five Counties, it went well. We made plans to set up some recreation (swimming and a music program.) We are now focusing on communication, physiotherapy and visual stimulation. I love all the people involved in her life, but her physiotherapist Sue, holds a special place in my heart. She is just the most calm, funny, positive thinking person I have ever met. We love her.

Well I think that is all for now, I try to throw out the bad stuff and only take in the good stuff. I want to say Congrats to all the new mothers and all the old ones too :) Casey and Ashley, your time is coming very soon, I am so happy for both of you. Congrats to Melissa and Don on this fine October day. Charles and I just celebrated out 5 wedding anniversary the way we saw fit (dinner and ice cream with the kiddies, watching TV and then early to bed HAHAHA) We may be "comfortable" but we love our lives and value each and every person in them.
MAMA POWERS

sick?

It's so hard with children to know when they are not feeling well, but this is especially true of a special needs child. Charles and I have little clues that tell us and a good one is that Briar is not regurgitating as much. This is always bitter sweet for us. To see our baby not constantly in pain from throwing up is wonderful, but it usually means that she is getting some type of illness.

We went to the pediatrician on Friday and she politely gave me trouble for not administering Briar's phenobarb on a regular basis in the evening. Typically we give it to her in the morning and after a long day at daycare and then coming home to eat, Briar is asleep before bed time routines. I shouldn't make excuses, but she doesn't live our life and she doesn't always get it. I do what is best for my children always, but I really hate meds... and Briar REALLY hates meds (too thin!)

Anyways, Briar had a great week at day care. Her front 7th tooth finally came in!!!! But she has a big one coming through and she seems to get very agitated in the evening. We just rub it for her or offer her something cold (which she hates)

I have really been working hard on a few signs with her this week. She has her own "eat" sign because she puts her fist to her mouth, but we are also working on "sleep" and "milk". I think I will start "mom" this week and Charles try teaching her "dad"

I am so tried, I have been working a lot lately to get some money for Charles so he can have a great time on his trip in December!! Have a good night everyone XOXOX Ashley

PS Oh yeah, Ella's first day of school is Monday!! She is in full days all week. Her classroom is downstairs from me, but still close enough for me to walk by every so often HAHAHA Oh we are all so excited, Briar even picked out a nice dress for her to wear on her first day.

Reflux

Dear GERD,
I hate you! Please go away and never return!!

Cookies

Just using the title to entice you to read my blog :) Anyways, I am just waiting for the butter to melt a little in order to make Briar's favourite cookies!! Okay I LOVE them too (Thanks Michael Smith). So far today we walked to the library, met Charles at the laundromat and had a nice lunch. We also attempted to nap (I attempted to teach Briar the sign for sleep), but it was unsuccessful. She is probably cozily sleeping next to Charles right now!

We have had a great week. Loraine is Briar's new enhanced staff at daycare because Laura had to return to the before and after club. Loraine is great, she is very easy going and loves to play. Typically a few times a week, Briar is covered in dirt or paint or something hehehe. Briar had Osk and Amanda Dunn (her new resource teacher) visit her at daycare on Thursday. Osk called to say goodbye and had some great things to say about Briar's progress!! I will truly miss her. She was the first person directly involved in Briar's therapy. She always had positive things to say and she always gave me encouragement when I was feeling down. I'm trying not to cry right now, but it's hard!

Briar is really wanting to sit up now, like all the time! It makes it very difficult to feed her. We used to recline her but she fights it and because she can't quite keep her head up, the food goes everywhere but her mouth :) Any suggestions.... scratch that, no complaining here!!!

Now that I think of it, I have been meaning to ask, I hope this doesn't sound too negative... Does/Did anyone have a child they thought wasn't going to progress any further? I take Briar as she is and I really don't care if she develops any further, but it always seems like every 1P36 child can do more than her. She is still working on head control at 19 months. She can't really use her hands other than to scratch her face off. I definitely know when she is unhappy, but other than that she hasn't changed since she was born. I know it's a slow process, but did anyone feel this way and get totally surprised? I'm just trying to get a handle on what to expect... and that in itself is the problem, every child is different.

I think Briar will be starting PT again, Sue is done holidays and left a message to start as soon as we can. I am just trying to figure out school stuff and then I promise to return her call :)

I am interested in signing Briar up for a class or something. Any ideas? We did swimming and I can handle a lot but the teacher had the nerve to tell me she thought Briar was wanting to go home and giving her sad looks, or that if we couldn't do it, that was okay!! I told that B**** that it was good for Briar and that she loves water. Moving on, I also struggle in "average classes" because everyone either stares or asks me questions (I don't like telling complete strangers my life story so they feel better about themselves) We live in a small city and it's difficult to find other people with similar experiences. We have heard their is another family with a 1P36 child, but genetics can't give us any information! I am saving money to go to the conference next year. It looks so fun! But Charles can't go, because summer is the busiest time of the year for him, so I need a partner, any takers?

Ashley

Good things always come

So right now we are in what I call a "good" phase, meaning very little regurge!! :)
It makes me second guess wanting the GJ Tube, yet when we are in a "bad" phase, it is really bad and I cry in my van a lot!! Anyways, so we are waiting to hear from surgery with a consult for a GJ tube. Day care is reporting that she is eating A LOT more than she was (which is awesome) but I feel like I have to make a big decision that changes the rest of Briar's life. Like I said, when it's bad, I know with 100% certainty that we want the tube, but when it's good....

More good news, Briar started at her new day care in July and has a 1:1 staff, Laura. Things are going WONDERFULLY!!! I am seeing a huge change in Briar's expressions (lots of little side smiles, letting me know when she has had enough :) She seems to be growing up in front of me and I don't know where the time has gone. I wonder if she needs a sibling.... HAHAHA!!! Kidding!!!! Not for quite a while.

About a month ago we finally got her Kimba and we LOVE IT!!!! Seriously, what were we doing before this stroller!! It actually makes life easier because there are no more weird looks or funny faces when the age questions comes. People just know and I am more than happy to fill them in :)

Briar and Ella are my everything. I knew I wanted to be a mom since I was like 6 (thanks to having a niece to be my baby, Jess!!) but I never would have guessed I would get to be a super mom!!! Having an exceptional child has made me a confident and secure person. It has also made me a lot more open minded (I'm pretty open minded!!!) and it gave me a chance to look at the world a little differently.

So.... I intend to love and be loved, read great books, have a glass of wine everyday, love love love my children and leave our earth a little better than when I came to it. PEACE

Oh how things never change

The title may be deceiving, but what I mean is the problems seem never ending. However, this is not a sad blog, it is one of motivation.

So, on Monday May 17, 2010, we headed at 6:30 am I may add to Sick Kids in Toronto. We went to the GI/Nutrition clinic. We didn't even have to wait that long ;) The nutritionist and doctor agreed that Briar is not gaining weight, in fact she is losing weight especially in the last 4-5 months. I was aware of this because her clothes fit better now than in January. Anyways, she is currently 75 cms long and 8.51 kilos. The nutritionist said that is about 2 1/2 feet, 18 1/2 lbs.

So the doctor asked us a lot of questions about Briar and her eating habits (throwing up 10-20 times a day, eating 3 bottles and some pureed foods, medication and digestion) After gasping at the amount of times she threw up (Charles and I laughed although it's not funny) he had three recommendations;

1. New medication - It is similar to what she has been on but more powerful. It is a special order medication and they have to get permission to prescribe it. They also have to locate a pharmacy that can make it or ship it to us. Because of the side effects of this medication, Briar had to have an ECG of her heart and blood work. We are just waiting for the results. If all goes well, the doctor thought once started, we would know within a week if it is working or not.

2. A Nissan Fundoplication - sound familiar? Briar has already had this surgery and the doctor said that although it is an option, that in children with neurological disorders, it usually isn't successful. So he doesn't recommend this one

3. A GJ Tube - This is a tube that is placed through the stomach into the small intestine (jijunum) and food is fed through this tube. Because the small intestine is much smaller than the stomach, the process of feeding will take much longer. But when I questioned the doctor about feeding her orally and then possibly just tube feeding at night, he said this is an option. I am excited about her possibly not regurgitating as much, but really undecided about how this will affect her life in the long run. We have a lot of thinking to do, but as always Briar is the best that she can be and we love her more every second!!

So I will update about the stroller in the next post!!

Anything you can do, I can do better, I can do anything better than you! (No you can't, yes I can)

Well next week is a cRaZy week LOL I guess I should mention that they are all crazy with Briar, but this one is especially.

Monday - GI at sick kids (third times the charm?)
Tuesday - Recreation and Seating clinic (YAH!!! Been waiting so long for a great stroller to support Briar)
Wednesday - Off work because E and B don't have day care (Good luck in Germany Cait!! We will miss you so much!! )
Thursday - Another CHAP meet and greet (where we will hopefully find a respite worker)
Friday - Wedding rehearsal for Cole and Alicia
Saturday - My little brother gets married!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

With regards to B, things have been going well. She is adjusting beautifully at Shelly's. She has started homo milk and a sippy cup twice a day. She is really getting good at holding her head up. She is taking a little break from physiotherapy. Mostly so I can work full time for a few weeks, but also because it's nice to have a break :) She is sleeping well and not up coughing all night. We almost made it through the spring without antibiotics too... oh well, she is feeling better now.

My friend Carol and I were just talking last week about the "first" time someone would ask me about "what does Briar have?" Well it happened last weekend. Helen and I were out with our girls, and the owner at Playstreet (who was so nice) asked Helen how old Briar was. Carol and I thought this would give her away hehehehe, anyways when Helen told him, he approached me and asked if Briar liked balloons. I said, yes... shiny ones :) He then asked me a few questions and we talked about Briar . It was such a nice first experience with "why is your child different?" but funny how we observe those around us. He went on to talk about his daughter going deaf at 4 years old and how she now has a cochlear implant. I was amazed at his openness, he has obviously been doing this for longer than me. I, however, am learning. I'll post with a lesson when I learn it LOL

Did I mention my brother is getting married next week?? This is crazy and amazing itself. We waited a long time for him to propose, but I always said "My sister in law, Alicia...." HAHA Anyways, I will post a few pics after the wedding. This is so surreal to me, but I am ready.... I hope you two are as well :)

I am tired

Hi Everyone,
Well as we look around, it's easy to see that winter has left us. My chives are growing and the birds are singing.

My little B had been doing all that she can to hold that huge (and by huge I mean small) head of hers up. We are really working on chewing. This involves me putting food such as shredded cheese, bread or cooked pasta in her mouth and manually moving her jaw up and down. It seems to be helping. We are also trying to transition to a sippy cup. This is not easy as the flow is fast and B likes things a certain way (don't we all?) We try it every so often and hopefully she starts preferring that to a bottle. Today we see Dr. M and I am really hoping she says, "No more formula for that chubby babe" hahaha I can hope. Briar was sick a few weeks ago and we were in hospital for a four days. It was weird, we knew we weren't going to be staying, yet the same feelings of anxiety and anger were still there. I felt snappy with people although I'm sure they didn't notice. We had a male nurse and while I was casually talking to him he said, "I know, isn't that retarded?" I felt sad for him.

We have started the process of getting Briar a special needs stroller. This can be used for so many things such as a high chair. We have done the home assessment and now we need to go to a seating clinic. I am very excited but also sad, we were hoping by now that Briar would be able to support herself. Her muscles seem so strong to me, sometimes I think she could almost sit on her own because of her back muscles. Anyways, Briar's reflux is getting worse again. It was completely gone when she had pneumonia and now it has returned full force. Lately, I have felt like crying when it happens. I used to think, oh we'll just wipe it up and be on our way. I'm not sure when that changed, but I do feel stressed now about it. We went to walmart today and she threw up 5 times in the store, we were there for maybe 15 minutes. The car ride home was another 2 times and a couple more once we got home and moved her into the living room. I hate reflux more than anything else because she is in pain having solid food come up and out. I watch it rise to her throat and we attempt to have her swallow it, but lately she has been coughing and then it all comes out. The frustration is also there because she has to wear a bib all day or change her clothes all the time.

I am currently trying to access community living services. I am playing phone tag with the woman and secretly laughing about how she will react to a 1 year old seeking these services, but Osk said that Briar is someone who will need them so why not start that relationship now? I happen to agree. It feels so nice to talk to people who enjoy your child even if she doesn't smile or talk back.

We went to the sugar bush this weekend and a nice old lady said "Oh, look at her eye lashes. They are beautiful, hello darling!! Oh, you aren't very happy are you?" How do I respond to that, as a person who is now accustomed to dealing with this situation I laugh it off and say, "No, she's just tired" but as a mom, I am tired of people seeing her as sad or unhappy, that makes me feel terrible, like maybe she won't ever be happy. The swimming instructor told me she thought Briar looked sad and was trying to tell me "Get me out of here mom" I don't blame anyone, I would probably respond the same way. I am just tired....

Back to the grind

Well today is the day I never saw coming, I`m back to work. I knew it would happen, but all of the sudden it was Sunday and that meant the next day was Monday!! So last night was spent in tears. Ella of course the independent go getter was like,"Mom, its okay, tomorrow I'll go to Shelly's and then when you are done work, you can pick me up" Unfortunately I didn't share her enthusiasm.

It`s been awhile since our last post. Briar is so close to being able to hold her head up on her own. She has a new motivation, I'm just not sure what it is. All of the sudden over Christmas break, she decided to start looking around and focusing on people, she seems more alert and aware of her surroundings. Its incredible!!! Family has been an amazing support over the holidays. Everyone wants to hold Briar and help with her many needs. Oh tumble form, what would we do without you!!!

With encouragement I did cut her bangs. I have to be honest, it was hard. One of the only normal things about Briar was her long beautiful hair (okay it could also be seen as freakishly long but...) So I cut it, cause I don`t care if people look at her funny or gasp when I tell them her age.

Charles and I did get our genetics report back and as expected, Jeanette said we have completely normal profiles. Not that that matters, but it allows us to relax when baby making resumes LOL (not for a long time Carol!!!)

My friend Jes is about to have her baby in February... sorry Jes, just a guess :) HAHAHA probably not too funny to you but I am not pregnant so I can laugh. I am so excited because then all my girlies will be mamas, and amazing ones at that. So I think that is all for now. I will update soon, as we have physio today and I think Sue will see a huge improvement

XOXOX Ashley