Don't be late, Darn it!

Ella says hi and would like you all to be impressed with her excellent skills at holding her head up.

Ella would also like you to know that her mommy woke up at 4:45 this morning to work out. Her daddy did not.

Now that we have Ella's thoughts for the day out of the way, let's move on to my frustration of the day:

I mentioned in my last post that Ella has 3 great therapists. I lied. She has 2 great therapists and 1 therapist who started out great but decided being on time wasn't important. The time we set for our appointments was 8:30. She arrived at 8:40. OK. Trying not to be a bitch, so I let it slide. Next time, 8:45. I bring it up to her. She tells me she lives in Maricopa and with traffic it isn't possible to make it here at 8:30. Hmm. Ella is your first appointment of the day and I am not asking you to be here at 6:00 AM. I decide to be nice. I move the appointment time to 8:45. The next week she arrives at 9:00. OK. Now she pissed me off. I tell her we need to keep the appointment time at 8:45. She agrees and tells me she won't be late. The next week she texts me 30 minutes before our appointment and tells me she has a funeral she forgot about and won't be able to make it. THEN, the next week she shows up at 9:15!!!! I sent her home. I don't have time for that nonsense. I get being a few minutes late every now and then but really, out of the 5 weeks you never show up on time once? Go mess up someone else’s schedule…


Today I set out on my quest to find a new therapist. Easier said than done... My support coordinator at the DDD is on vacation, no pediatric therapy office in the valley has developmental specialists, I called the state program that is supposed to be my support system and they had no clue what I was asking for. I not only wasted my mornings waiting for the therapist to show up, but now I have wasted time out of my day trying to find a new therapist with no luck. Ella will now miss 2 weeks of SI therapy and I feel horrible, but I can’t have someone 30 minutes late constantly. We have other therapies to get to, Ella is supposed to get an hour with each and her tardiness not only cut into that therapy session but her next one as well. Grr.

Today I started my new nanny search.  I seriously thought about throwing money, free laundry service, food, beer or whatever it would take to get Brigid to stop teaching and be our nanny full time but I know she likes the free meals teachers get at Chipolte and that is something I can't match, so I assume that come the end of July we will be nannyless again.  I will make sure to keep you all updated on how the search is going. I can only assume it will provide lots of great stories for the blog.

Now on to an Ella update:

Ella has been running a fever since she had her shots and it makes me sad to see my baby Ella Bella not feeling well. She is so cute when she is sick though. She tries to be her normal little baby self but it’s like at ½ speed. I also decided it is time to push for some occupational therapy.  She keeps her little hands gripped so tight and occupational therapy will help that as well as get her ready for holding a spoon and toys. I feel like I walk a thin line each day with not knowing if something Ella is doing or not doing is totally normal or Down syndrome related.  I want her to eventually have OT anyways, so I am going to start now and then I don't have keep staring at her hands to see if she opens them. I know, I am neurotic...

Something else I didn't mention last post is that we are going to start learning baby sign language in July.  I am excited for this as they say that it is really a good way to communicate with Down syndrome toddlers as their speech can be so delayed. I kept putting it off but we need to learn it.  The Dr. asked me if Ella was blowing raspberries yet or making certain sounds and she isn't so I have to assume that her speech will be delayed and get her understanding the signs sooner rather than later. My biggest fear about learing sign language?  That I won't remember it. I swear, my mind is mush these days and I am afraid I will learn it one day and the next I will be clueless.  I will be the only one in my family unable to communicate with Ella. It sounds irrational, but I mean it. I had a dream I was trying to sign to her and my hands weren't doing anything and she was crying out of frustration.  Tell me that doesn't make a mommy feel bad when she wakes up the next morning!

The boys... I haven't mentioned the boys in a while... They are being obnoxious little tornadoes and really, who ever invented summer vacation should be ashamed of themselves for thinking it was a good idea to have siblings together for 2 months. One of them might end up taking a long trip to Grandpa Jeff’s in California if they don’t learn how to get along real soon. They are cute, but challenging. Reed is into swearing and Ryan crys over any little thing.  They make an awesome pair.

4 months...

I have a 4 month old baby... She is pretty darn cute. I won't lie. I wake up at 5 AM and just stare at her sleeping little baby face and I am so happy she is mine.  I feed her and we snuggle and I sometimes make lots of noise to wake her daddy up just so he knows we are up and ready for him to snuggle with us.  For the most part though, I sit and I stare and I wonder how the heck did I get here...

Well, without being too graphic, as I am sure we all know how I got "here" (and if you don't, I would suggest staying far away from wine and the opposite sex until you figure it out), the bigger question is how have we gotten from day one in the hospital to today, day 126 of Ella Bella's life without going crazy.

We got here by lots of love, patience, family, friends and good support.  The minute we opened up to others about her having Down syndrome was the minute we could start living our lives again.  When I talk about Ella to someone who doesn't know she has Down syndrome, I feel like I am cheating them out of a huge part of her life story so far.  Her birth story isn't complete without it. Her first doctor visit or her first stomach bug are all interlaced with her extra chromosome.  Ella is a normal, super happy baby, but she is also a baby with Down syndrome and as I have learned in the past 126 days it is not something that I need to keep from people.  When they ask me how my delivery was, I respond with the truth... Great until minute 22 of her life. I tell them as much of the story as time allows. I don't cry, I don't say it with sadness or a hushed tone. I say it with pride.  My Ella is who she is because of what she is made up of.  Down syndrome is part of that, her adorable grin and chubby cheeks are part of that. Her little cry when she is hungry and her snores when she is sound asleep are part of her too.  We take every part of her that makes her "her" and embrace it.  I don't walk around shouting from the roof tops that Ella has Down syndrome, but I don't hide it either. And really, when you look at her, all you see is adorableness...

She had her 4 month doctor visit today....  She now weighs a whopping 10 lbs. :) well, 9 lbs 15 ounces to be exact...  She is doing so great. Growing in line with her "curve" and meeting most baby milestones.  She is a champ at rolling over and holding her head up when she is on her belly. She is also a champ at smiling, tracking objects as they move and eating.  If we were grading her though, I would have to say that Ella could use a little work on holding her head up when supported in a sitting position, cooing and laughing.  Now, to be fair, she is on the verge of laughing (according to her Aunt Brigid who knows all about laughing) and she does coo but not very often. The best thing??? I have 3 wonderful people who come into my home once a week who do nothing but make sure Ella is getting a lot of practice in the cooing, laughing and head holding departments.

Yes, 3 people, 3 times a week... Do you know how many extra vacuuming sessions that equals out to be? (You all know about my vacuuming obsession, right?) A lot. Like 6 more times I have to vacuum (3 before and 3 after) but really, it is so worth it.  Ella has a team that swoops in and focus on her and her little muscles for an hour at a time.  These people are amazing and great with kids and don't get discouraged when the tiny little baby in front of them falls asleep or screams bloody murder. They just plug along, smiling and working towards our end goal of keeping Ella in line with her peers.  I am so happy to have them here. Yes, there are times that I wonder if what they are doing is really helping, but I have to remember to take a step back, stop looking at today and look at tomorrow and then I realize it is all worth it. The fighting with insurance, the sleepless nights about her interviews with the state health agencies. They are all worth it. Ella is thriving under our team approach to her development.  Doctor's appointments like today make it all worth it. When the Dr. asks if she can roll over and when Ella not only shows her but does it 4 times, I get it. I smile and I get it.  Ella is only 126 days old but in those 126 days, she has beat a lot of expectations. I like that.

An entire month has gone by? Really?

When I started this blog, I made myself a promise that I would never go more than 5 days between updates. I did good in the beginning, then, as life has a way of doing, I got busy and the days don't just fly by, they zoom by in supersonic time. The type of zooming where I wake up and think it's only been a few days since I posted but really it's been a week and then all the sudden, it's been a month and I want to post, but the daunting task of catching up on the month gives me writers block and well, instead of posting I drink a glass of wine and go to bed....

That's not fair to Ella though. This blog is about her and will hopefully serve as a way for us to document her milestones and remind us that even though we might get frustrated or sad, overall we have so much to be thankful for and so much to look forward too. I also hope that one day, this blog might help others who are taking their first steps into the new world of "special needs babies".  So, for those reasons, let's just quickly recap the last month and then get to the important stuff - Ms. Ella...  :)

In the last month I have:

Gone to Vegas
Gotten a nasty stomach bug
Nursed my 3 children and 1 husband back to health from nasty stomach bug
Spent a night in the hospital with my baby girl hoping she could survive the stomach bug
Made the biggest business decision ever
Spent a week in Denver learning how to implement said decision
Realized a nanny that quits by text because she only got an 8% raise and not a 16% raise is a nanny I can live without
Been sad that Mike's dad has been in the hospital (twice)
Been even more sad that my Grandma has transitioned from being able to be at home to being at hospice and now is spending her last days at a group home
Nursed 1 husband back to health from the stomach bug (yes, again)
Dealt with my business partner leaving me twice for a week at a time (yes, I miss her)
Learned how to fire a therapist
Learned how to love a therapist
Wished Fathers Day could have been better by my own dad not being so far away
Caught up with a long lost friend who I have neglected for way to long
Celebrated 2 birthdays

See, I have been busy. No excuse though, I know.  Ms. Ella is much more important, so for that reason, here is my goal:

I will post to this blog AT LEAST 2 times a week.

If I do that, will you promise to still read it?  If we pretend that the last month never happened and with the next post we all act like you knew how the last month has gone will it be OK? Because if so, hang on, I don't ever set a goal I can't reach...  :)