Thursday, September 19, 2013
A month ago, tomorrow, we decreased McKenna's tube feed by 100 calories. She has managed to maintain her weight and this past week even gained 2 oz. This is huge for McKenna! If we were stuck at this quantity of tube feed for a while I would be disappointed that it wasn't still decreasing, but it would still be improvement so I would be content. However, we aren't staying here. We are decreasing her tube feed by another 100 calories. I am so excited! Starting tomorrow, McKenna will be getting one box of formula instead of 1 1/2 that she was getting last month, or the 1 box plus 2 oz from this month. Gooooo McKenna Goooo!!! As always, my prayer is this trend continues. It is during flu season, so that is a bit worrisome but God is in control and knows the outcome before we even begin to reduce it again. So cheers to eventually being a tube free baby. Cheers to one day having her own room and a big girl bed. Cheers to growth and weight gains and a happy, healthy little girl.
I admit it. I am a controlling, overbearing, codling mother. I want to always hold the twins - love on them, hug, kiss and smother them. They are my babies and I just can't seem to get enough time with them. I love their brains, and their thought processes. I love their humor, their attempts to dominate, their cuddling and their entire beings. They truly make life amazing and I will never be more blessed then I am right now. I have dreaded the day they start school because of separation anxiety - for me, not the twins. But I must admit it has been nice to know that twice a week, for a few hours every Tuesday and Thursday, I will have the opportunity to run errands, grocery shop without screaming, workout or have a cup of coffee with a friend. Keaton loves school! He has made two friends he talks about a lot - Payten and Logan. He is the class clown and struggles to listen to direction from the teacher because he is so wrapped up in making his friends laugh and in being silly. He is very smart and loves learning too. He comes home sharing scriptures they have taught him, or songs they worked on, or moves they learn in PE class. I love watching his passion for school. The only hard part is that he truly just wants to be silly and as a mother I want him to be well-behaved and respectful. Also, he is only 4 years old and already wants to walk to class by himself. He doesn't want mommy dropping him off or holding his hand to cross the street. McKenna has had quite the struggle with school. She is very bright and loves sharing what she learns, but she is my observer. She would prefer to sit back and watch what everyone does rather then be a part of class. She screams and cries every time I drop her off. She says, "I don't want to go to school. I just love you soooooo much." And if that doesn't melt a moms heart then she is probably without one. McKenna is very loving and my continual prayer for her is that God would bless her with a friend each year so she can grow and enjoy school. I don't want her to feel lonely or fearful in class. McKenna loves her teacher, Ms Amber, and says she is her best friend. She doesn't eat that well in school, but often comes home from school hungry. Her favorite part of school is music time and McK loves to scream out the songs at home.
Friday, May 17, 2013
Oh Lord God, PLEASE let us me truly seeing improvement in little Mickey's eating! It's scary to think, post, speak anything positive because it usually goes downhill from there; but, I cross my fingers and say McKenna is still doing really well. We have remained on the same quantity of tube feeds, and speed for 19 months (almost 20) and it has been exhausting and challenging. My continual "debate" with Kyle is that McKenna is making improvements because her food choices have changed. She tries different foods, different textures, different temperatures, etc. His debate is that there is no improvement until her tube quantity decreases. Well, unfortunately her tube quantity has not decreased. However, we are going to Kansas City in July to meet with the clinic again to see what steps we should take next to get her off the tube. In the past few weeks she has gained half a pound - our goal is for her to gain that weight in a minimum of eight weeks, so looks like - in my opinion - she is ready for her tube feed to be decreased. God is good. God is faithful! God hears. Please Lord, hear our plea to get her off this tube.
Sunday, February 3, 2013
Wow, are we glad the past two weeks are behind us. It started with a simple tiny cough Sunday night, and the next day Keaton had a serious cough that didn't seem to stop. Took to doctor since he started getting a fever around 102 and found out he had the starts of pnemonia in his left lung. Keaton was so sick! His eyes looked like they were filled with puss, his temp was up to 104 for four days and maintained around 102 during the days. He wasn't really eating. Was drinking great, but would cough so hard he would puke. It was very scary and as a parent I am not sure we have ever felt so helpless. Within a few days McKenna got a fever of 100, which isn't high, but the last time she had a fever she had a seisure so we were very frightened knowing the possibilities of that occurring again. Her cough started within a day or two of the fever and the doctor said McKenna had Pnemonia in her left lunch as well, in the center part of it. Apparently that location causes extreme nausea so in addition to non stop coughing McKenna was dry heaving, not eating with her mouth, not really sleeping and her fever started to spike up to around 102. Three days on the Rx and McKenna started complaining of ear pain and was whimpering every time she coughed, so we took her back in. Her body was resisting the antibiotic and she had an ear infection. Keaton finished his meds yesterday. His fever is gone and cough minimal. It mainly only occrus when he is super active. McKenna is on day 5 of her new Rx. She is still hacking a lot, even when not overly active, so we are giving her an inhaler to help calm the cough, although it spikes her heart rate and makes her very energetic, and energetic kiddos equals increased coughing. I can't believe how difficult of a flu season this has been for the twins. While I understand they will need to build their immune systems, it is hard to watch them get sick THIS much, in just hte past few months. Since the beginning of December Keaton has been sick 4 or 5 times, with at least two of those being puking colds. McKenna I think has only been sick two or three times, and although I absolutely HATE the feeding tube, I do believe it is helping her to stay healthier because the vitamins in the formula she gets each night. Cheers to a new year, and a new season of healthy children.