School's coming!

I cannot believe that the summer is almost done! School starts next tues. I am SO excited. Kristen is too! I got a phone call yesterday from her teacher. I was shocked! Just wanting to see if anything had changed over the summer, or anything she should know going in! REALLY serious! A teacher who cares outside of the classroom! How often does one see this?! And the great thing is...she was Joe's Grade one teacher. She's teaching Kindergarten next year, and then going back to grade one! This means, Kristen will have her for two years! A teacher for two years that gives a rats bum for her students! WOW! The principal called me later in regards to the fundraiser that we're doing. Same day!! lol. She also let me know that the SEA for kristen does have level one sign! There's support of a school for a child's success! We are sure blessed. Advice going into school....for those who have children with needs, or really without needs and you have worries. Start with all of the workshops that the agencies you are dealing with have to offer. GO to them!!! They are informative. There are other parents with experience too. Write down your questions. Ask them! Go to the school. Talk with the principal. Get to know him/her. Join PAC/PTA meetings, just to get a feel for them, before you get into the school. Get to know the teacher's. Make yourself seen! They will treat you with respect when they know that you are on board with education! Don't be in their faces either. Let them do their job, but allow them to know that you're supporting them. Try and volunteer in the classroom's with reading. Not too often as to take away from your child's school experience either. Let your children go...they will be ok!!! Happy Summer, and first day of school!

Disneyland

Well here I am sitting in Disneyland. I've been here for four days, and go home tomorrow. I am here for a Tupperware conference and am having a blast. I left my kids at home. I feel guilty about it. But at the same time for my mental health, I really needed this break. I have never left my kids except to give birth...lol...which happened a few times over the last number of years...lol. I must say, I have never been here before. WOW! I am in stimulation overload. I have had so much fun. But I am so ready to go home to hug my babies. I can't say that I won't do it again though. I think that for my sanity, now that I know I have some, I really did need a get away. But I still feel guilty. I know how much my kids would love it here.

Oh well. MAYBE next time. We'll see.

School starts in a week and a half, so the routine will be back to the grind. I'm pretty excited about that. I know that the kids have been asking over the last couple of weeks to go back, and that they miss it. I think that Kristen will be the biggest change. She's talking so much more now, and so much more clearer! Truely, it is amazing. I can't wait to have school start so that I can get back into the classroom's to help out too! There isn't much left to get together. Just a few more shirts for Joe, and away we'll go!

A Gift

I was given the most amazing gift from my best friend yesterday. I was given the opportunity to watch the miracle of life being born. It was truly an amazing experience. Isobella was born at 4:17am. After her poor mommy was in labour for 24 hours...to the minute! She was 6lbs 2oz. The amazing thing was the nurse was having my friend try to push a bit before the dr was called. And there was the head. Second push, and the head was half out. I just told the nurse, let me know what you want me to do? She said here, put a pad over the half born head, and said hold. Ok, no problem. I held, looked at my friend, and knew, baby wasn't waiting. She delivered the rest of the head into my hand. Now some may think this is all weird or gross. But it is the miracle of life, and when in the postion you don't look at things the same way. I was just in awe. At the end of it all, her little girl is just the perfect of perfect babies! And to see daddy's face when he heard it was a girl. You can NEVER duplicate that! Thank-you so much to my best friend. Although she may as well be family!

Renal Clinic

Because Kristen had complete renal (kidney) failure while she was on ECMO and in the ICU, we became a part of a study that BC Children's was doing. They wanted to know if there was long term effects on the kidney's after function resolved. Kristen was the oldest (almost three at the time) and most severe case (almost 7 weeks of failure) that they had. So I agreed to do the study. I wanted to know for my own knowledge as well, as no one had any answers as to whether or not we follow her or not.

The findings were that she was indeed on the border line of being almost mildly kidney diseased. Meaning, if we hadn't done the study, and hadn't done a 3 hour GFR test (radioactive dye put in her and four blood works), we would have never known....until it was too late. She would have been in complete kidney failure. And would have been needing a kidney transplant. Now because they caught it so early, we are monitoring it.

So the plan, nothing has changed too much. She is still stable. Her creatine (sp?) has risen, but she's also grown too, so it should a bit. So in another year, we repeat the GFR test and see where we're at!

Joe turns SEVEN!

Holy moley! My baby boy is now seven! How he's grown. He starts grade 2 in a month. He's so excited!....lol...as am I! He is doing so well now. No one would really recongize that he is on the ASD (Autism Spectrum Disorder....he's PDD-NOS) at most times. He's reading now, and doing math adding and subtracting. He's so proud of himself!

It's been a rainy Summer

Since the end of school, we have gone camping, gone to the movies, had the kids playing in the back yard...well when it's not raining. What a pitiful summer it has been! We got the kids a little pool, and they love it....when they can enjoy it that is! I think that mother nature has been PMSing lately.

We leave for a two week camping trip on monday. Well not really a full two weeks. I will be back and forth with the kids through out the first week. Joe still has tutoring and sportball soccer, and Kenny has IDP etc. The second week, I only need to come back once. But the kids are just as happy to go for the nights anyways.

Kenny has received his new stander. He's liking it. We saw the neurosurgeon this week. He's happy with the lack of brain pressures as of now. So we don't have to see him for another year now.

It's just been busy as usual...with a bit of sleeping in! September will kill me with that one...lol!

Kristen, Kristen, Kristen!

Well my little CHERUB is growing up. Last week we had her intergration meeting with the school. And believe it or not, I left feeling good! I feel like Kristen, and myself are going to be supported to the fullest. She is doing amazing things this little girl of mine.

We had a CI mapping today. We were taken into the booth, and she did her listening. She did such great conditioned play. She even hit the button when there was nothing even being presented....well, I figured out pretty quickly it was because I didn't hear it! But she did! Uh Oh, time for mommy to have a hearing test!

She was then presented with an assesment of vocabulary for 5 year olds. She quickly got bored, because she was getting it! And so the audiologist moved up to the 6 year old assessment. WOW. She did really well with that one too! I am just so proud of where she was, and where she is!

Slow!!!! Down!!!!

A blog to follow

This blog is of a 23 year old man, who has PDD-NOS, and is giving insight into what he feels and see's. So very interesting, and nice to have a voice as to what we may be dealing with with Joe. I thank him for allowing me to share!

http://voicefromthespectrumop.blogspot.com/

Water proof hearing aids.

http://talkingtwentyfourseven.blogspot.com/2009/03/water-aids.html

this person has allowed me to share this post with you. I felt that it was a nice way to let people see this too!

http://talkingtwentyfourseven.blogspot.com/2010/06/prepping-for-water-fun.html

This one was for short tuerm spraying!

Thanks so much for letting me share!

Neonatology followup

Kenny had a Neonatology Follow-up Clinic on Tuesday. The PT felt bad bringing us in for the visit. She knows that we are well supported in the community. Of course they saw lots of change in him and were happy. It's slow for us to watch daily though. But the last time they saw him, he was only about a month post-op for the hydrocephalus. So of course there were tonnes of change since then. They have classified him as a level 4 maybe 5 on the CP scale. There are only 5 levels, one being maybe walks with a limp. I said, that's nice, no one will be able to predict his future and every baby has a different early intervention stage, and really since he has only been without brain pressure for 8/9 months, that took him right to almost a newborn stage again, he is doing well. Now don't think that I'm burying my head in the sand in denial. I do believe that Kenny will need a wheel chair. I do believe that he will have some mobility. How much, that I don't know. But I like to think postitive. I do know the reality too. But it doesn't change who he is.

The pediatrician there has put in a referal for full genetic counselling and work up for the whole family. It's just so curious how we have won the lotto on our kids, and why. Is there a genetic componant? Who know's? Again, doesn't change anything or anyone, but will just give us more information.

Sand....yep!

I think that we have officially hit all of the tactile issues with Kristen! She has been through all of it! I think it has to do with her vision as well. So we started with cement, grass, gravel, bark mulch, and now we have achieved sand. If you saw her last year, taking her to the beach...yikes...it was like putting a cat in a bag! She would scream and dig her heels in and refuse to go! I'd pick her up and just sit her on a chair beside me. Well we went camping at Camperland in Bridal Falls last weekend. And she walked on the sand on the first day. Shoes on...but did it. No screaming, and on her own free will. The next day it was shoes with no socks and dumping the shoes every 5 minutes. Then out of no where...shoes off...thrown to the side and walking! Barefoot! HUH??!! And then the kicker, she started kicking her toes in the sand! How far she has come!

BioChemical Says....

We met with the Dr yesterday. She said it could be another 4 weeks for the muscle results to come back. They have basically ruled out almost every type of metabolic disorder that we can at this point. Our blood work showed that Gary had the same broken chromosome as Kenny, but because Gary doesn't have the same things wrong with him, it can't be genetic to that specific gene. At the end of all of this we may find that we won't find anything. But at least we have investigated. And I have exhausted all options. We will still do a genetic testing on the family after this is all complete. Just to see if there is a link between the kids and all that is challenged with them. Not that it changes anything, but it is just information. Or it may change course of treatment. I feel like I'm just a medical journal here sometimes. People's eyes start to glaze over when I have gone through our list, and the medical terms. But I'm glad to know that at least I can educate myself on my kids to the extent that I have.

Walk Walk Walk

Our family will be participating in the Walk for Bright Futures. These funds are used for both BC Family Hearing Resource Center, and Surrey Early Speech and Language Program. We have used both of these wonderful services and I am pationate about fundraising for them. To be able to support an organization that is so family based and supportive, is such a blessing. Please, if you can pledge us as we walk 4.1kms. Help to get the funds to bring down the wait list for the SESLP. They service the hearing children with speech delays. Our wait time for Joe was over 18mths. With more funds, we potencially can bring down these waits, as we all know early intervention is of the utmost importance!! And we have had the honour of being the poster family this year!! The poster has my husband and my second daughter on it, and the pledge brochure has Gary pushing Courtney and Kristen in the stroller and Joe on his bike! So cool!!
Thanks so much for your support!

http://www.gifttool.com/athon/MyFundraisingPage?ID=1761&AID=1487&PID=199183

The kids and technology

I was wondering why my screen saver was saying that it couldn't find the file. I have it as a slide show of my photo's. Well then I went looking for the photo's. Joe has officially deleted a years worth of pics from my computer. I understand why he accidently did this. The kids are constantly dragging things on the iPad into new groups. Well I guess he did the same with the pictures on the PC. I have to now go through my Facebook and copy all of the uploaded photo's back to the computer to be able to have copies. All I can say is thank goodness for FB!! And can I be mad at him, nope, I should have really been watching him on the computer. He has usually just played his games, but with the use of the iPad he was looking for youtube! And movies to watch. Darn mommy, for letting them have the freedom!

Surgery complete

Kenny went in this morning to have his muscle biopsy done. He so far has done fantastic. I can't see the incision as of yet, the dressing needs to stay on for some time. Now we wait for results. I have an appointment with Biochemical on the 20th of next month. So we'll see what they have to say.

Spring Break

Well we are half way through our spring break here. We get two weeks! They added on 10 minutes a day, to give us another week off. They did this last year with the oh so beloved Olympics here, and just carried it to this year. I personally like it. I need the break from everything. So what have we done...

We had an adventure on the Ferry Boat to Victoria. The kids just loved this. We had a beautiful hotel room and were able to just really relax. While we were there we went to the Undersea Gardens. That was amazing! There is a guy in a scuba suit that comes down and shows us all of the fish life that can be handled. We were able to see star fish, and an octopus...creepy little fella, and he has even conditioned the fish to come to a bell when it's time to feed! Really cool! We checked out the bug zoo....a bit expensive, neat, but above the kids level. But that's ok, it's all about the experience for them. We swam in the pool at the hotel and ate dinner on the roof top restaurant on the 18th floor! On the boat back, Joe saw a kid that was on the boat over, so he REALLY thought that was neat. They were making playdates with eachother, high fiving, and telling eachother "see you later dude!". The kid lives in Seachelt...lol...we will probably never see him again. But that's ok. Tues we visited my sister in law in Ferndale where she was camping. Well acutally we met her at the mall for dinner, and the kids played in the play area for an hour. It was late so back we came. The next day we went back again...it was beautiful out. Spring MUST be here! (finger's crossed anyways) They played for 5.5 hours! It was awesome. Thank goodness for my Nexus pass...the border lineup was over 70 minutes long! Thursday we played it mellow, and I just soaked the kids in the bath for 2 hours!! lol! Friday, Gary stayed home, so off to the McD's play place and then to JYSK. We needed a new mattress for our trailer. We got one a heck of a deal...then I lifted the mattress in the trailer to find MOULD!! EWWWWW!!! Could not believe it! It's not even 2 mths old. How the heck does moisture get in there...anyways to the shop it went....and now Kristen is asking every 5 minutes, Trailer??!! Fix it??!! Man they love to sleep in it even if it's outside the house!! Saturday, I did a Kids Swap meet for my Tupperware, and then we did a Costco shop after. The kids love this, cause they know that we eat there after! And who wouldn't??!! We all eat for under $18.00! It's so cheap and good!! Today, so far is just mellow. Who know's what the rest of the week will present. I'm sending Kristen to PALS (her deaf pre-school) and Courtney will join her. This will give me 3 days of 4 hours to spend with just Kenny and Joe.

Kenny has his muscle biopsy on Thurs. I was able to get in on a cancellation! That's right it pays to say, "PUT ME ON A CANCELLATION LIST" If I hadn't we'd be waiting at least 5 mths. Then we meet with biochemical disease control on the 20th of next month...we'll see what that says!

Muscle Biopsy

I had a call about two weeks ago from Biochemical Disease control, letting me know that they want to do a muscle biopsy on Kenny. The hitch is that the OR time can be anywhere from 5-8 months to get a date. Well, I just stated about 3 times...lol...that she needed to physically write on his paper work, that I want to be on a cancellation list. And to put it in BIG BOLD letters. And told her that if she didn't they won't call me to do it!! Well, they called today. He has an appointment on the last day of this month! And to get those results from that test can be another 3-6 mths. Thank goodness I'm able to get him in quicker. Who know's what and if they end up finding anything at the end of all of this testing. She says sometimes it's just a mystery. The neurologist isn't convinced that based off of his brain MRI's that it's metabolic, but something genetic. So really who know's. At the end of the day, his damage is done, and he's still my little Kenny. And he will still always have challenges.

Just curious!

I see so many people from all of the world that are following my blog. I'd love to hear who you are and where you are from. Also what brings you to show interest. I'm not saying this in a bad way, just really want to 'meet' you all! So just comment and let me know, and thanks for following! It means a lot that in the world of cyber space that people that you don't know and never met, care and pray for your family! Bobbi :)

She's teaching him!

It was so cute! I put Kenny beside Kristen and Courtney on the couch, just to sit with them. Kristen started saying and signing 'play' to him. He looked at her, and she then proceeded to hand over hand him to sign play! I was filled with so much pride, and couldn't believe that she was being a leader!! She then was taking his hand, and trying to get him to press on the iPod. And in her jargon, was telling him how to use it! Adorable!

Bio Chemical

Well Bio Chemical Disease control called. Now we need to do a muscle biopsy for Kenny. Sheesh, another test another wait. The wait just for the appointment, because he'll have to be sedated, is at least 5 months away. I told the nurse to PLEASE write on the requisition that MOM has requested that Kenny be put on a cancellation list. Hopefully this will be seen, and we get a call soon. I know that at the end of all of this testing they may just find nothing. But, I figure what do we have to lose. I have also requested to the pediatrician to send the whole family to genetic testing. Not sure if all the kids are having something that relates to them all genetically or not, but I feel it would be interesting to find out.

Another birthday in our house!

Three years ago today, I was a very 35 weeks pregnant, with my blood pressure rising! 160/100. So the dr admitted me. When I got there I was already 3 cm dialated. They broke my water, and 2 hours later at 7lbs 4oz, a Courtney Joy Taylor was born. This is the only birth that Gary got the honour of cutting the cord. This is the only birth that we got to hold her for a minute before they took her to the Special Care Nursery. She stayed for 6 days, had an NG tube dropped for 2 feeds, and then home to the hectic Taylor household. She has developed "typically", actually a bit quicker in some aspects as a typical kid, but who wouldn't with all of the exposure to all of the therapy from the older two. She got to go to Pre-school a little earlier than this pre-school usually does. She is our snuggle bug, and our Courtney!

Happy third Birthday Courtney!

Happy 5th Birthday to my CHERUB!

It is so hard to believe that five years ago today our journey started. Oh how our lives have changed. I certainly do NOT take anything for granted anymore. There were so many things that had happened and have happened to make me realize that we don't have the control over our lives that we think that we do.

My baby girl Kristen Marie Taylor was born today. Five years ago. We don't even have an accurate birth weight for her. I do know that her blood type is A+. Only because everyday I would ask, How much does she weigh? I had no idea how serious Congenital Diaphragmatic Herina's (CDH) were. He right lung was a 1/4 of the size that it should be. Her pulmonary hypertension put her on ECMO (heart and lung bypass) for 12 days. The ECMO along with the pulmonary hypertension caused her kidney's to fail. A pic line caused a blood clot in her left leg, causing a small stroke in her visual portion of her brain. The ECMO caused multiple brain calicfications. Her PDA being open caused her to stay on high frequency ventilation for almost a full two months. It also caused her kidney's to work harder until they fixed it. Within that week after the heart surgery she came off of ventilation, and dialasis. So excited over PEE!! LOL! The ventilation caused many years of feeding issues. The feeding issues caused failure to thrive threatening us with the possiblility of G-Tube feedings. We dealt with many issues around reflux (GERD, common with CDH). She never crawled, she butt scooted. Her hearing was taken from her when she about 6 months old, risks with ventilation and ECMO and CDH. We need to remember that ECMO saved her life. It may have done damages, but it gave me my miracle. She was implanted with a cochlear implant at 21 mths old. She eventually walked at almost 23 mths old. Her depth perception made her very cautious. She had troubles changing from one area to another when looking at carpet to laminate. She was diagnosed on the Autism Spectrum Disorder. I wished soooo hard to know, What is she going to be like at 5??!! I just wanted to rush the time so I could know! Well here we are FIVE years later.

Kristen is registered for Kindergarten in the fall. She is still working on speech sounds, but she is signing up a storm! She is pretty much always happy. She gets in trouble just like any kid does. She is a walking miracle. She is loved by her brother's, sister, mommy, daddy, and friends and family a like. Everyone around her is so proud to see the amazing changes that she has been making lately!

My little girl is FIVE!!!! Happy Birthday Kristen!

http://bobdoble.blogspot.com/2009/04/kristens-run-with-cdh.html
This link above will show a previous post that show's Kristen's story.

Featured in the BCFHRC newsletter

Such an honour to be a feature family in the newsletter for BC Family Hearing Recource Center...here's the article for your reading pleasure! So cool! Didn't really know that we were all that interesting...lol!

The Taylors – Together Every Step of the Way
Bobbi and Gary Taylor and their family have been receiving services from the BC Family Hearing Resource Centre since October 2006 when their 2nd child, daughter Kristen was diagnosed with hearing loss.
Below are some excerpts taken from Bobbi’s blog celebrating their 6th Wedding Anniversary, in November 2009. Bobbi also shares with our readers, their family’s journey to date.
Six years ago today, we said I do.
Six years ago today, we had no idea where we'd be.
Six years ago today, we began a journey
That most could not begin to imagine
Six years ago today, we began to plan our family.
It wasn‘t too long after the planning began that our son, Joe joined us in August 2004. Seven weeks early, he was so small and perfect in our arms. We took him home on his 19th day and were delighted to watch him grow, smile, walk, and giggle.
Joe was 10 months old when we found out we were pregnant with our first little girl. When Kristen was just 20 weeks in utero we learned that she had Congenital Diaphragmatic Hernia (CDH)—there was a hole in her diaphragm on her right side, allowing her liver and small and large bowel up into her chest cavity. We were told that she had a 50/50 chance of survival. She joined us in Feb 2006; three weeks early. We could not hold her, we did not even hear her cry but, she fought hard, and succeeded; we were able to take her home after three months in hospital, on my birthday. However, due to her CDH, we spent a lot of time at the hospital. Kristen was given a variety of life-saving medications, received ventilation and underwent ―extra-corporeal membrane oxygenation‖ or ECMO, a highly invasive procedure for treating insufficient organ function.
Due to all of this, Kristen took part in a routine hearing screening which led to the further diagnosis of profound bilateral hearing loss when she was just 7½ months old. This was definitely not easy and was unexpected: however we know that if it hadn‘t been for these life-saving measures from a large health care team, she wouldn‘t be with us here today. Shemay be deaf but she‘s alive! Knowing that she‘s overcome such odds, we don‘t take for granted that our baby is here with us. She is almost five years old now, and we‘re so lucky to have her. There may be complications, delays and challenges all related to her rough start at life, but she survived and we have made it, together.
We were receiving good services to help Kristen with her hearing loss and were using hearing aids. Then, in November 2007 Kristen received a cochlear implant which was activated a month later. As with the hearing aids she had previously worn, we had to work to keep her equipment on, to teach her signs and words, not to mention helping her with her other challenges such as eating and walking.
It took a lot of appointments with various professionals but I‘ve learned that therapy does not rule the roost. While it is an important part of our children‘s lives, there is more to life than therapy. Day to day life is therapy…therapy is not just one hour a week…I have to carry their therapy into the whole day…it‘s how I apply what I learn in that one hour that helps me throughout the day. That is what makes a difference in their lives. We, their parents, make a difference in all their lives.
Even after all of the therapy, feeding issues, hearing loss, and the constant worry we decided that our family still had room for more. We welcomed Courtney in February 2008. Five weeks premature, she too was so small and so perfect. This time we got to hold her right away and my husband, Gary got to cut the umbilical cord! We had a very busy household with three thriving children.
I have come to realize that diagnoses are just words; they do not describe who my children are. I don‘t focus on their diagnoses. They are children first. I have also come to realize that I can‘t control outcomes, but we can work hard to make the most with the cards we have been dealt. I encourage the children to try anything and everything. I truly believe that the world is their oyster and I try to ensure that they have normal experiences outside of formal therapy sessions.
As a family, we love camping and we spend many weekends enjoying the outdoors together. On the weekends our children are excited to be spending time together doing family things. Even though it can sometimes be tough, we know that keeping a sense of humour has helped us through a lot. And so… we have learned to expect the unexpected.
When Courtney was just five months old, Joe was diagnosed with Pervasive Development Disorder not otherwise Specified (PDDNOS) which is one of the disorders included under the umbrella diagnosis of Autism Spectrum Disorder (ASD). This news was hard to take at first. We had had concerns about Joe and had suspected that something was ―off‖ or ―not quite right.‖ After all the appointments and assessments we thought we were prepared but, actually hearing the words and reading them in a 15 page report was very hard. The truth is reality sets in and we had no choice but to move on and ensure that Joe receives the help that he needs.
Amongst others on the large team that helped us with Joe, we worked with Linda Spencer, Speech and Language Pathologist, with Surrey Speech and Language Services. It was great that we could access services for Joe and Kristen in the same place. We feel comfortable at BC Family Hearing Resource Society. It is like our second home and we know we have support there. However, it is through the networking with other families and reaching people online that I have gained the most outlet and support. It is through helping other parents with their experiences and challenges that I know I am not alone in my situation.
By the time Courtney was 11 months old we thought that our family was complete...but what a surprise when we realized someone else had a plan for us—we found out we were expecting a fourth child. But, remember what I said about expecting the unexpected? Before Kenny came, we learned that Kristen too was on the Autism Spectrum. This diagnosis didn't seem to bother us as much as it did when we first found out about Joe. This time we knew that there would be a great system of supports for us to help her make progress with her skills and we were confident that she would succeed, after all, she had already proved herself to be a survivor!
Kenny joined us 8 weeks early, on Aug 20, 2009. We thought the others were small!! Yikes, not so much! Kenny was so tiny and perfect. We waited for Kenny to come home and kept waiting and waiting. His Bradycardia (heart rate slowing) kept continuing, so the doctor did a head ultrasound and found significant brain injury. Wow! This news hit us like a ton of bricks. After we gathered ourselves, and got all of the information we could, we again had no choicebut to move on from the diagnosis and accept Kenny as we had our older children. Again, we had more faith this time that there would be health care professionals who care about our baby and would monitor Kenny‘s progress and hopefully keep him ―on track.‖ After waiting 47 long days and traveling back and forth from our home in Cloverdale to Surrey Memorial Hospital in Surrey, we were thrilled to bring him home.
Today, Joe is now attending school full time and receives one on one support in the classroom. Kristen is now 5 years old and 4 years into hearing with her CI. We are very pleased with the progress she has made. The CI provided access to hearing and with all the hard work that has followed she now has the ability to listen and to learn spoken language. She attends the PALS program at BCFHRC three days a week and she is able to go to her community preschool three days per week. Next year she will go to Kindergarten at the same school as Joe. We are thankful to have a one on one worker who devotes a lot of time to Kristen‘s needs. She really has become a good friend and a part of how our family functions.
With Courtney, having no developmental challenges has been amazing. While I am thrilled that she is healthy and thriving, I have had concern that having siblings who receive so much of our attention through special appointments all the time takes its toll on her. While Courtney has been able to participate in services that Kristen has received through BCFHRC, we were glad when we were able to enroll her in a community preschool classroom of her own so that she could have her own special thing to do where she can be independent. She‘s doing so well but, boy, is she a little monkey.
Kenny is now seventeen months old and we have recently been told that he will have developmental delays (by now this seems almost ―normal/typical‖ to us). He is also visually impaired, has infantile spasms (seizure disorder) and hydrocephalous. It is a lot to contend with and despite all our experiences with his older siblings, finding out he will have gross motor delays, (cerebral palsy) and will probably never walk has still affected us greatly. It has helped me through that Gary and I have been going through this together, every step of the way. We have certainly been tested over the past six years.
Together we have found that routines are important in our family. We need the routines so we can create space for ourselves. We are still so in love. Gary is fully engaged in his father role. Even after working all day at our family-owned landscaping business Gary comes home and immediately engages in one on one time with the children. He takes the children on outings and to their various after school lessons in the community.
more from Bobbi’s blog:
Six years ago today, I never would have guessed that we would have the ups and downs;
the good, the bad, and the ugly.
We are still in love, (some days more than others) but, in six years as a couple,
I don't think that our relationship could have been tested more.
We have become so strong for our kids and because of our kids.
Six years ago today, I would have never guessed that my life partner, best friend, husband, and father of my children would help to create with me such wonderful children; our family.
Six years ago today, I married my best friend!

Chew, Chew, Chew

It's strange. It feels like overnight, we don't talk about feeding anymore. Kristen has really become a true eater. It has only taken a full 5 years...lol! She asks for salad, she eats sandwiches, she won't touch beef with a ten foot pole...lol! I've tried tricking her when I give her the burger into thinking it is just bun and cheese, her favorite, but she smells it! She pretty much smells everything first. But that's ok. Last week it was a granola bar! She chews gum!!! REALLY, gum!!!??? Amazing. She can pack back a half a box of KD in one sitting. And does she eat! Where does it go?! She's still only on the 3% for weight, and 8% for height. But at least she's on the chart! She was under to about the -10% for the longest time. But she has now maintained for the last 2 years on this nice curve. Like everything with her, she did it in her own time.

I just go back in my head remembering all of the challenges that we had. Man, I guess I just didn't realize how tough it was. Getting her to eat with a spoon. Drinking from a straw. Using a fork. Heck, just self feeding period! And the smallest of small baby steps that it has taken to get here. She used to gag on EVERYTHING! Now it's the opposite...lol! She actually overstuffs her mouth, not good either, but she's not leaving it there to be pocketed like before, she's actually swallowing it. The tricks that we have used with her! And she's now just flying high. I don't even have to make seperate meals for her. It used to be such a challenge some times wondering, what do I feed her tonite?!

Where things are at right now

Kenny has seen the neurosurgeon. He doesn't need to see him for another 6-9 months...of course unless i notice anything. He has officially been off of his vigabatrin now for a full week!!! So far so good! He's still not really gross motorly moving, but he's getting stronger.

Joe is now sight reading words! WOW! that's been a long time coming for him. He is also staring spelling tests where he is expected to just write the first sound he hears. Well at home we practice the whole word. He's doing well with that too now! He lost his first tooth careof the dentist on Thursday. it had been deaf for awhile, and got absessed so out it came.

Kristen is now replacing her coil on her head for her implant! WOW. She is trying so hard to communicate with other's. She doesn't scream when at skating lessons anymore, and actually loves it! She doesn't scream at swimming lessons anymore and actually loves it! lmao! She is also chewing all of her food pretty much now! Feeding issues....well sometimes i think not! She even chews gum now!

Courtney is just our little turd! lol. She is so bright and challenges us all the time. She's so independant and doesn't realize that she's not even quite 3 yet!! And the language that she uses is so complex! Amazing to see!

People ask how we do it. I have never used the word can't...thought it in my head, but never used anything as an excuse! Exposure exposure exposure

I treat my kids 'normal' whatever that may be. I am also never wanting people to think that there situation is nothing compared to what I deal with daily. What people experience in their homes is different that what I do, and it is ok for anyone to feel frustration at any time. I am not hear to inspire, or over shadow, or make you look bad. I'm here to be my kids mommy, and be the best mommy I can be!

A run down of our weekly AVERAGE schedule

I've been asked by a couple of people why I haven't blogged lately...or where are my posts...lol...well I thought that I'd bring you into an average daily, weekly schedule. Hold on tight cause it's quite the ride...lol

Monday's
6am-wake up
8:20am-get everyone out the door to take Joe to school
8:50am-load up the van to drop Courtney off at pre-school for 9am
9am-drive Kristen to the BC family hearing resource center for her PALS program (a preschool like program for the deaf and hard of hearing)for 9:30am
(recently I've had my Behavioural interventionist picking up Courtney and Kristen to take them where they need to go so that I can go back to the school with Kenny to help with the reading program at Joe's class.)
11:30am Pick up Courtney from school.
1pm Kristen arrives home
2:20pm go to pick up Joe from school
4:30pm take Joe and Kristen to Skating lessons for 5pm
6:30pm get ready to go to Rally with my Tupperware ladies.

Please take note that in between the actual drop-off/pick-up times there are feeds for Kenny, and the fact that he may not let me put him down, and of course all of the 'normal' daily things that need to happen around the house ie. dishes, or phoneing to do follow-up appointments for ONE of the kids...lol

Tuesday
6am wake up
8:20am take Joe to school
9am take Kristen to PALS
10am take Kenny with Courtney to Physio, and physio swim
Kristen is dropped off right from PALS to preschool at 12:30 by her BI (thank goodness for her!!! She is my heaven sent of sanity!)
2:20pm pick up joe for school
2:50pm go to pick Kristen up from Pre-school
3pm alternating Tuesday's Kristen has speech therapy
once a month I do the PAC meetings, (PTA for my American friends :)) at 7pm

Wednesday
6am wake up
8:20 drop Joe off at school
9am drop Courtney off at preschool
9:30 Kristen to PALS
10am sometimes IDP comes in once a month, or I may use this time to observe Kristen in the classroom for a bit, or visit and connect with other parents.
11:30am pick up Courtney from preschool
1pm Kristen is home
2:20 pick up Joe
4:30pm skating for the older two, all three of the oldest one's in another week!
7pm PEER group once a month. A group that is there to support parents for children going into Kindergarden for the deaf and hard of hearing.

Thursday
6am wake up
8:20 drop off Joe
12:30 take Kristen to preschool
2:20 pick up Joe
3pm Pick up Kristen

A little bit of a quieter day, sometimes there may be a morning appointment with OT, or pediatrition or specialists at children's etc.

Friday
6am wake up
8:20 joe to school
9am Kristen to preschool
11:30 pick up Kristen
meet at McD's or someones house for a weekly play date for the girls.
2:20 pick up Joe, and once in a while a friend from school will come to play

Saturday
7am wake up
9am swimming lessons for the older three
the rest of the day will depend on visiting with family or birthday parties or me doing a Tupperware party

Sunday
Just depends on the weekend, sometimes can be just as busy...lately it has been!

ONe day it will slow down right?!! IT has too! lol! I do it all in the name of love for my kids! And because of it, they are doing soooo well!