What is unconditional love? Let me tell you. It is being kept awake all night by an infant screaming and puking, but with one smile at dawn forgetting about it all. Unconditional love is also bickering about who is going to stay up with the baby, then waking up, looking at your spouse and knowing that there is no one in this world that you would rather share this brutiful life with. We were handed a terrible hand of cards, but Adam and I can still count our blessings that we have each other and our boys.
My littlest valentine is such a sweet happy boy despite his illnesses. I never get tired of people telling me that he is such a good baby. Hopefully his sunny demeanor will carry him through rough times ahead.
Lately, he hasn't been able to tolerate his medication that once worked well. He continues to vomit frequently, and we haven't seen much weight gain. He had an unremarkable upper GI series to check for any anatomical reasons for the vomiting. Again, it's a relief that the test was normal, but there was a part of me that hoped that there was something that explained the vomiting. As he becomes more mobile, we are becoming more and more anxious about putting him in his crib with the feeding tube and the accompanying electrical cord. Sleeping at night is not so easy when I am constantly worrying about the cords and Lochlan aspirating on his vomit. At this point, we have exhausted our options to help him gain weight. We continue to wait for a miracle.
A NYS Early Intervention team is going to come next week to assess whether or not he qualifies for their services. If he does qualify, we will have access to a speech pathologist, occupation therapists, physical therapists and a nutritionist on a regular basis. We have only had inpatient contact with a nutritionist, and have been told that there isn't a nutritionist available on an outpatient basis. As I research our options, I can see that there is a 4 week feeding program at CHOP, but there is a long wait and it would require that I stay in Philadelphia for the entire time.
Also, we saw Lochlan's new Urologist. She works with Lochlan's previous urologist, but she has office hours closer to home which is a huge bonus. Despite not being warm and fuzzy, I am pleased with her straightforward bedside manner. She said that her professional opinion is that Lochlan's urethra will function someday, but the timing of his kidney transplant will complicate the process.
In other baby news, Lochlan has four adorable little teeth now. He says Mama, Dada, and Baba, which either means Barbara (his babysitter) or brother. We continue to work on crawling and standing, but he gets extra tired and fussy if we push him too hard. He lives in the Baby K'tan carrier, which I don't mind because it is the only time that we have to snuggle just the two of us.
