The Hailey Herald

The Hailey Herald

Sunday, November 6, 2011

What a week!

I apologize in advance for this being a super long post!  We had an unusually busy week.  I definitely have not been good about blogging since the challenge was over last Monday. 

Tuesday, I had an ob/gyn appointment.  It is the first time I have been back there since my post-Hailey follow-up.  I plan on changing practices but decided to go ahead with my annual there and then start searching.  We are definitely (as long as God agrees!) finished having children so I don't need an ob.  This appointment was with the nurse practitioner.  She asked to see pictures of Hailey.  The first thing she said was, "Oh, she looks mild".  I didn't have the energy in me to argue the comment and explain that "severity" of her Down syndrome.  I think I was more annoyed that someone in the medical profession was not more educated about Down syndrome...something that they speak to future parents about!  I did change the subject onto my birth experience with Hailey and why I was seeking a different practice.  I started at the beginning and kept going.  I'm sure she was late for her next appointment but I had a lot of stuff (for lack of a better word) to get off my chest.  She seemed baffled why the on-call ob would send a woman on her third pregnancy home in full labor.  I simply responded that she would have to ask that ob.  She questioned why the ob didn't tell me Hailey had Down syndrome.  I told her it was a blur but I don't think the ob was around long enough to even look at Hailey.  She delivered the placenta, told me that I didn't need stitches and then we didn't see her again until the next day when she said "it could be worse".  I had to assume the nurse practitioner would tell the doctor who delivered Hailey everything I was saying so I wanted to choose my words and accusations carefully.  I only gave facts and how I felt as a result.  After I said my peace on that, I broached the subject of the new Down syndrome prenatal test.  I gave my opinion that I think if more non-medical information was given to new parents at diagnosis that we might have a chance at decreasing the abortion rate.  I suggested giving name and numbers of parents who have a child with Down syndrome, giving the phone number to the local Down syndrome association or even have a mother with a child with Down syndrome write a letter about life with Down syndrome and include it with the medical information.  She said that was an interesting idea but I couldn't tell if she was patronizing me or if she was even giving everything I said thought. 

Ian getting busted in the Halloween candy.  When I called his name, he responded with "I'm not in here".

Later that night, I attended Mom's Night Out with some mom's that have children with Down syndrome.  Our Down syndrome association is quite large so it has been broken into satellite groups for playgroups and other more intimate activities.  Our Mom's Night is once a month.  I've gone twice now and I truly enjoy it.  There have been 6 or 7 of us at both of them.  This past week, most of the moms have children older than Hailey.  I learn a lot from this group of women!

Wednesday Hailey had way too much therapy for one little girl!  In hindsight, I won't schedule two in one day EVER again!  She did great but it wore mom out (and stressed her out a little bit too).  She had EI in the morning.  The previous week, L had told me that sitting would come soon and to not even work on pivoting at this time.  Ha!  Hailey sure showed her!  She was sitting without propping or support and pivoting.  L laughed and wondered what else she could tell Hailey "not" to do!  We worked hard for an hour and then had lunch and headed downtown to Children's.  Hailey had an appointment with OT and speech.  Hailey had to flirt with a beautiful older boy (22 mths) with Down syndrome in the waiting room.  She showed off her sitting skills and flashed those dimples!  I was very happy with her therapy session.  At six months, the speech therapist said she was only communicating at a 4 1/2 month level (it didn't help that she didn't babble at ALL!).  Wednesday, the therapist said she was 7-9 months...since she is 8 months old...I'm quite happy with that.  The OT said that she thought Hailey was doing fantastic and she thinks it is quite possible to have Hailey crawling by 12 months (we'll see if Hailey agrees with that!).  We were given our homework and then will be back to them in January.  I absolutely love her two therapists at Children's!  They are fantastic with Hailey.  The speech therapist has siblings with Down syndrome.  I'm not thrilled with our drive downtown but so happy and blessed that we have such fabulous medical staff and such a wonderful hospital so close to where we live! 

Thursday we had a new parent dinner with the Down syndrome association.  I was very nervous about this dinner.  I'm not sure why.  I'm not a shy person.  I don't have a problem talking to strangers that I have absolutely nothing in common with...not sure why this one made me nervous.  I think part of it was that we had just explained Down syndrome to our boys the night before.  Ian had no questions.  I didn't figure at 4 that he would ask too many questions.  Brayden's only question was if Hailey could die from Down syndrome.  The dinner end up great.  The boys were angels and Hailey couldn't get enough of the mac and cheese and mashed potatoes. 

Hailey hanging out at the new parent dinner.

Hailey with her new bear.

The stress and emotions disappeared on Friday when my oldest (in years, not age) and dearest friend came to visit us.  I have been friends with her as far back as I can remember.  I think it is was around 5.  We grew up together....we even roomed together in college for a couple of years.  We were in one another weddings and we stayed in contact as I've moved about.  She lives "back home" which is 3 1/2 hours away from here.  It is the first time I've seen any of my friends from there since I had Hailey.  We had such a great visit and she was so fabulous with Hailey (and the boys).  I didn't expect any less from her.  I knew she would be great.  It just made my heart happy to see someone that has been such a huge part of my life accept and love my daughter for exactly who she is.  We stayed up chatting until 1 a.m.  I was sad to see her leave Saturday morning but so very glad to be able to visit with her. 

My dear friend, me and the kids

Relaxing with Dad

She loves to yell when she is in her highchair!

We spent today doing the things that makes my soul better.  We went to church this morning and then we went for a bike/walk this afternoon.  They both help clear my mind and center me. 

Fortunately, this week isn't near as crazy and hopefully not as emotional as last week!

Mom, look at all the toys Ian brought me.

I know you want a smile, Mom, but I prefer making faces.

That fresh air wore me out!

1 comment:

  1. My word, that is one crazy week! I missed you guys and was wondering what kind of adventures you were up to. Hailey sure didn't suffer in the cuteness department this week.

    Good for you talking to the OB's office. That is great. Gives me some ideas.

    And glad you went to the new parent dinner. I was nervous for our first too, but am so glad that we go now. I've been to 4 events now (one of them on Saturday) and really love them. Nice to have an in-person community, in addition to my treasured online one!