Briar two and a half

Ella turns 5, what a beautiful little girl you are

Things happen for a reason....

So from my last post, you can guess that I made the big jump from working mom to stay at home mom... well that may change again! On Monday (my first official SAHM day) I received a phone call from my employer, asking if Charles and I would be interested in moving to Norwood (a little town, 20 mins outside PDOT). We would be providing care to three boys who live at the foster home. We would live with them and become a bigger team than what we already are.

We have thought about this option for a long time, we have always wanted to be involved in foster care, and than opportunity knocked... hard!! We are very excited and have decided to take on this tremendous fulfilling responsibility. We hope that everyone will share our enthusiasm, though some of you might not see us as much as you used to. We have a lot to learn in the next few years and plan on making the best of it.

With that all taken into account, we still have a great summer planned and would love to visit anyone willing to take us!! We love you all XOXOXOX

spring = change

Well Spring is finally upon us and I AM READY!

Some new things happening, my beautiful niece was born on April 27, 2011. She is perfect in ever way. Just look at her!! I have three nieces and two daughters, so lots of excitement in the coming years LOL

Briar has been doing very well. She is currently fighting a cold (it's a long, uphill battle) but she is doing it on her own with no antibiotics so we are quite proud :)

The best news (for me) is that after June, when school is out I will officially be a stay at home mom!!! I am over the moon excited about this important change for our family. I feel like we really need to focus on Briar's therapies, and this is the best thing I can do for her and Ella. Anyways, just a quick update

Ashley

Winter's End....

Winter is almost over and we are very hopeful that that means the end of cold and flu season. Briar was in hospital 3 times this season and it makes for a long long winter!! Anyways, I am just posting to say how excited we are to be attending the 1P36 DSA Conference this year. I am trying to get everything ready although it's in July. I have barely left my province, and never left this wonderful country, so I am a bit nervous. Mostly because of our accents LOL So basically the plan is to leave on the 13th of July and drive for 13 hours. We will then go to our camping cabin at a KOA and get a few hours of sleep. From there we will drive another 5-6 hours and arrive at our destination Bethel University. We will be there for 3 days and then camp on the way home again. There are speakers, activities and lots to do around town. I don't think I have been more excited in my life.... oh gotta go get Sierra, BYE!!

What's new

I have no idea when my last post was or what it was about, so thought now was a good time to write.

The past few months have been hard. I am usually a positive mama when it comes to Briar but I feel like I'm breaking. Not sure if that describes it accurately but I am struggling. I am not used to having an ill child. I know I have said this before but every hospitalization makes me feel lost and trapped at the same time. We adapt as best we can. I guess I am feeling like why I am working if I am needed with Briar all the time. When she is sick, I have to be off with her but we still have to pay our bills like daycare! I often feel like there has to be another option out there for special needs children but I haven't found it. In ontario, if you work, there is very little financial support (even Briar's disability cheque is based on our income) but what family can support two kids on a single family income!?!? I am frustrated with our system but I don't know what to do about it!!! I need a new accessible home, I need respite care and I need to win the lottery :)

Briar is in the hospital again with pneumonia. She never fully recovered from her last hospitalization at Christmas time. I am happy to say she seems more like herself now. I spent the night last night (Charles and I take turns) and I came up with a nice daily program for Briar. It should be fun to start once she is free. Example, Monday is tactile play, Tuesday is stretching and massage, etc... I will update you when we are freed.

PS shout out to mama McCann and here's to hoping a baby is entering the world any minute :) ashley, I love you! You are such a dear friend, we have grown from misbehaving teens to rocking mamas. Can't wait to meet him (... Or her) <3

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!!