|2012- She would sleep in the strangest places|
During the first 14 months of Squeaker's life I pumped milk and would feed it to her in bottles. This was very difficult most days but it was worth it. At about 4 months old the doctor wanted us to supplement in formula with the breastmilk. Mix the formula powder right in for the extra calories. The only one that didn't cause serious gastric issues was the amino acid based formula made for cystic fibrosis infants. But even that one was rough for her. It was decided that we would just stick with breastmilk and as long as Squeaker wasn't loosing weight.
I won't say that Squeaker wasn't sick for the those 14 months. She was having nebulizer treatments daily, oral steroids regularly and about once a month we ended up in the ER with a breathing problem. Squeaker had also started seeing her Gastroenterologist by they time she was 7-8 months old. Growth was slow but it was there and very few rounds of antibiotics. As crazy as it all was life was alright and we were getting in the swing of our lives.
Then I stopped pumping. My poor body just couldn't do it anymore, and Squeaker was doing a great
|2012- Such a face|
Like I said while on breastmilk Squeaker wasn't the healthiest kid. But it was mostly related to the LM. Suddenly after she stopped getting breastmilk she got an ear infection. 3 months, and 4 course of antibiotics later Squeaker had ear tubes put in. No joke within 2 weeks of stopping milk she started the infection. And it never went away until she had tubes put in. So around 18 months old Squeaker had tubes put in. A few weeks after that she had two teeth removed that had rotted out due to medicine complications. Well folks it was all down hill from there.
Squeaker was all of a sudden never healthy or gaining weight. We agonized over breathing, sleep, eating and balancing meds. Yeah that was 2012 and it was rough. The longest stretch Squeaker was healthy was 10 days. And maybe two days each during the other months. That's about 32 days. Which means Squeaker spent 92.3% of the year sick. Wholy Cow! Think of that in terms of a day, everyday you would be healthy and functioning for 1.85 hours. How much do you think you would get done in less then 2 hours everyday? If you could control that time when would you use it? Would you get two really great hours of sleep and muddle through the rest of the day? Or would you muddle through poor sleep and then have two hours during the day where you felt great and could accomplish anything? Could you live like that day in and day out for a year? All while not knowing what was wrong.
|2013- Getting ready to have teeth out|
It was in late 2013 after lots of testing and sleepless nights that we found out Squeaker has an immune deficiency. Want to know what some of the questions I was asked by the immunologist? "Was she breastfeed?" and "Did she start to get sicker after you stopped?" My answers were, yes and yes. Based on those two answers the doctor knew he needed to do some testing. How crazy is that?
I mentioned her weight. Want to see how different her growth rate was? Well here you go.
Sep-2010 to Dec- 2010 gained 3.61 lbs
Jan- 2011 to Dec- 2011 gained 7.5 lbs
-----Breastmilk and Food
Jan- 2012 to Dec- 2012 gained 3.5 lbs
Jan- 2013 to Dec- 2013 gained 3 lbs
Jan- 2014 to Dec- 2014 gained 7 lbs
-----Food and IGG replacement therapy
Look at those numbers. Breastmilk and IGG had pretty much the same effect on weight gain for Squeaker. It's almost enough to make me think about re-lactating, (yes that is a real thing). Yeah... maybe not. I did think about it a couple of times but just felt it wasn't right for my body or Squeaker. Low and behold she now hates milk and given her stinky immune system at some point she would still need the IGG therapy. So it would have been a lot of hard work just to end up in the same spot.
It just amazed me as I was going over Squeaker's charts this week. She weighed in at about 34lbs and
|2014- See the difference?|