I cannot lie...

I cannot lie. I am tired! I am tired beyond belief, a kind of tired that a 3 or 4 hour nap does not erase. A kind of tiredness that several naps do not erase. I can feel it every part of my being. A tiredness that comes from months in the nicu, rsv, ohs, reflux and feeding issues. It's funny.. when I read others post I don't get that feeling of tiredness from other moms. I am starting to think.. is this just me or is everyone coping better than I am? Or is it just a phase that I am in? Or is it the first year that is the hardest? I wonder, what is the secret to managing everything? When I read others post's I am always amazed at peoples energy, and ability to go to the zoo, or shopping or to a friends house...we are so not there yet. I wonder if others just post about the positives or is it that they have adjusted and are just...positive.:)

I feel that I have so much too do and so little time to do it in. We go to 4 hospitals for Wysdom's care each focusing on different elements of his care. So it is not uncommon for us to have a week where we are at 2 or more hospitals. For example, today we met with our pediatrician at one hospital in town and tomorrow we are going out of town to another appointment at a different hospital. On Monday we go to see his cardiologist..at yet another hospital.

I think one of the things lately that is contributing to all my exhaustion is dealing with all of the professional who all have a different spin on things and have their own ideas on what needs to be done. I must say that I have a new meaning and appreciation of the word "advocate". We spent the majority of this week and last week trying to advocate on Wysdom's behalf with our pediatrician to get a simple referral. This process included many phone calls to her office, sending information about the clinic that we would like to go to, calling back and forth several times. And guess what..still no referral. It is something that we are going to have to fight a little harder for and this all takes time! Then we have a feeding team that comes weekly to see how he is progressing. They want to know how much he eats? What he eats? However they are not so free with their suggestions on how to get him to eat or what techniques might be useful for him. So instead I research oral motor development on my own and talk to other mom's who have feeding issues in attempt to get some information.

I know I have heard that the first year is the hardest, but I am beginning to wonder if it settles down. Don't get me wrong. I love Wysdom with all of my heart but most of my time seems to be eaten up by appointments and feeding not to mention the complexities of his reflux. Some days I just would rather lay in bed and cuddle with him or watch him smile instead of all the hustle and bustle, but our schedule just doesn't allow for much of that. Other days I would just rather ...sleep!!

An Appointment Free Week equals...FUN

Wow... this has been a strange week, we have had a full week with no appointments. Trust me I am NOT complaining. I don't think that we have ever had this since Wysdom's birth. Actually to be honest I don't think we have had this since we found out about Wysdom having Down Syndrome. While pregnant, I had numerous prenatal visits located about an hour away from home and made the trip almost weekly. Since his birth we have had ongoing weekly appointments with a Speech Therapist, Occupational Therapist, Physical Therapist and Early Intervention Worker. Plus we have been in the hospital for a total of almost 3 months. So this week has been a rarity. I really don't know how we ended up with a free week so to speak...but it is nice and I will take it anytime. Don't get me wrong, I appreciate all of our therapists and the work they do with Wysdom but I never quite realized what fewer appointments would allow us to do.

Just look at the list of fun things that we were able to do this week in place of therapy appointments and hospital visits. I know this probably doesn't seem like much but for us this is a big deal. We hung out at my parents house and watched Blyss swim in the pool with her cousins. Wysdom got to chill out on the deck and relax in the summer air and have fun with his cousins too. The adults had a fancy chocolate martini made by my sister(yum!!). Blyss got to go to the park and splash pad and took her first swimming lesson of the summer. I got a few hours to relax and go to Chapters for a break and I was also able to visit with my friends at the health food store where I used to work before maternity leave. Julian got to have a close friend come visit us and meet Wysdom and Blyss.

I realized that when we are busy with hospitals and appointments I don't really feel like socializing too much as we are just keeping up with things and are functioning at fast pace. I think as a family we have really missed this part of our lives..I mean I think we have missed socializing and doing fun things outside of the home. Ah...it was nice. Next week or so we might try for a bigger outing to African Lion Safari or Niagara Falls. I will keep you posted.:)

A funny moment.....

Yesterday a funny thing happened to me, or at least I thought it was funny. We took Wysdom to Sick Kids Hospital for his plastic surgery appointment. The appointment was so the Dr. could look at the pressure spot that was created on his forehead from the cpap mask after his OHS. No this is not the funny part.( This is the part that makes me upset)


The thing is that we had to leave 2 hours before the appointment to get there on time since it is in another city and the traffic there is crazy. Julian and I got up at 5:00am, packed all our bags and car and left at 6:00am for our 8:00am appointment in Toronto. We took our 3 year old daughter with us. This is no easy feat to pack up for a road trip with Wysdom. It means packing numerous items such as (syringes, flush water, an extra ng tube, medications, stethoscope, face tape, kangaroo feeding bag and pump and many other needed items that I won't bore you with).


I was particularly proud of myself... we got to the appointment on time and in an organized manner. We were then able to go to Starbucks in the hospital and have my daughter eat her breakfast on a bench in front of Starbucks, while my son got his ng feed in the buggy and my husband surfed the net. This doesn't seem like much, but it was. We were able to function quite well and it felt like an outing to me. I even commented on this on the way into the parking garage that we had "come a long way" in getting ready for and going to appointments. I was so proud how smoothly things went. I was feeling thrilled that I had finally had an easy day even though we had a busy morning. I had done it!! I was one of those mom's that can seem put together and get through the hectic times. Ya for me.!!! You know what I mean, you sometimes see those mom's who just seem put together no matter what they face!!!


So we packed our two children in the car and all our gear and I drove off to the exit. After going up a couple of levels I heard a huge "bang, bang, smash and then glass shattering". OOPS....that was the glass bottle that I had placed on the roof of the car while I packed.....we laughed and laughed.....I guess I don't quite have it together yet!!!! Being a mom is definitely the most challenging thing that I have done and some days I just have to laugh at it all and know that I tried my best.

It's time to get healthy!

I got to thinking about food today and health. This is not directly related to my son, but more so about my health and eating choices during the last year. Yes, I can't believe that I, a student nutritionist is admitting to not eating the most healthiest of foods. I am not blaming it on Wysdom, but it has been a crazy year and a half of non stop activity and stress. Driving to prenatal visits an hour away each time, being in three different hospital for a total of 3 months, and numerous appointments in and out of the home have equalled very little time. It's not just the travel but also the feeding ritual for Wysdom which has kept us consumed. He is ng fed and has pretty bad reflux so we are always on our toes watching and running if he coughs or does worse....(all you reflux mama's know what I mean). As well I have been pumping breast milk for the last 8 months and that has been my priority...not cooking.



Really, I've had my choice in all of this!! Over a year and a half ago I was sampling in raw foods and eating lots of vegetables, fruit dishes, smoothies and fresh juices. It seems to me that under all the changes, the unknowns and the hospitals, my diet has taken a nose dive. Instead of making the most of my food, I have been just grabbing something on the go or worse, from the cafeteria in the hospital. Even though we are not in the hospital now, I still find that we are on the road a lot to several different hospitals( 4 to be exact) for numerous appointments. My husband and I are usually in a rush and just forget to eat or don't have time. Next thing you know we are starving and low and behold...we end up at a fast food chain again.


Now that I have outed myself...I am making a vow to change. We can't continue to survive in this manner of running off to a hospital appointment and grabbing something from the road or cafeteria.


So I am now going to try to embark on a new health regime and get back to eating like a nutritionist would and should! Wish me luck and feel free to share any of your yummy healthy favorite recipes if you like. Maybe it will help inspire me. I would be really curious to find out if any of you also fell of the healthy food wagon while dealing with the stress of your situations and lack of time?


Ps. Next is to incorporate my new old yoga routine back into my life. Oh and yes the healthy diet will have to start in a day or two as we are leaving for the hospital at 6am tomorrow to get there for an 8:00am appointment. No really... I will try to find something healthy on the way:)