Faith's Mom's Blog

This page contains affiliate links and Faith's Mom may earn a commission if you use them. As an Amazon Associate, Faith's Mom earns from qualifying purchases.  Learn more.   Ever since Faith was born, she has struggled with her digestion. When she was in the NICU, she would spit up after eating even the tiniest amount of formula. Her dad and I were convinced her tummy was too small to handle large volumes of food. Sometimes when she ate, her heart rate would drop really low, which is why she needed to be in the NICU for longer. She just could not get the hang of eating and breathing at the same time!  Faith receiving food through an NG tube in the NICU.  Grandma giving Faith a bottle when she was 2 months old.  After finally bringing her home, eating continued to be an issue as she struggled with severe reflux and constipation. We tried various formulas, but she was never able to drink enough formula to gain a lot of weight. She also had trouble burping, and she...

Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.   Faith is all smiles about her new van! Faith is ready to roll! After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around.  She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever!  Faith inside the van. Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith...

This is my first post of the new year, and it is already March - I guess I have some catching up to do! It has been a very cold winter here in North Dakota with several days below zero since December. I know that much of the country has had a tough winter too, so we are certainly not alone in being anxious for spring and the warmer weather that comes along with it. Faith especially seems to be struggling with the colder temps - it most likely affects her already high tone. It hasn't helped that it is more difficult to transport her since we can't use our van's ramp due to our door needing replacement. Rob has had to get her into the other side of our van which entails him sort of lifting her chair up into the van. We are looking forward to finally getting it fixed this week.  Now that I've gotten our weather-related issues out of the way, here is an update on what the rest of this New Year has been like for us:  We kicked off the year getting together with frien...