Haley’s Update

Just over one month ago we found out our 2 year old had a very substantial brain tumor. Since then we have been through a crazy journey. Surgery was just over 3 weeks ago and I feel like it has been almost constant crying, screaming, and little sleep. Between figuring out Haley’s pain tolerance, post surgery issues, 3 older sisters with school and sports schedules, play dates, piano, a 4 month old and Jeremy interviewing for a new job, each day has been intense and rough. Luckily Jeremy’s church responsibilities are easy and I have up to this point been for the most part given a leave of absence.

We knew the day we took Haley home she was having some vision issues. Either she has compensated well or her issues have improved but we are not sure yet. She has an appointment with an eye doctor soon to hopefully discover what she is able to see and make a plan for any issues.

Her speech is not as clear as it was pre-surgery. She forgets a lot of words and becomes frustrated. She often says, “I can’t say that word.” What she means is she does not know the word she is wanting to say. Sometimes I can give her the first sound of the word she is looking for and then it comes to her, sometimes not. She associates events with things. She will say, “what did I watch when who was here?” Luckily I know based upon that description what she is talking about and can help fill in the blanks.

When she has her melt downs she absolutely refuses to take any medicine (OTC tylenol or motrin) no matter how much I try to convince her taking the medicine will help her feel better. I do try to anticipate the melt down and get something in her which sometimes works. She screams at the top of her lungs, clenches her fists and opens her eyes really wide. She does not want to be touched. She will not use words to communicate, just more screaming. So we don’t know how to help. She doesn’t want to be looked at so she will cover her eyes or hide under a table or blanket or wherever. I just get to watch her and let her go through the melt down alone. After she calms down a bit I can ask if she wants me to hold her. When she is ready she will say yes and sometimes fall asleep. But, after that work out that is no surprise! If she doesn’t fall asleep she will ask or I will ask if she wants to watch her movie in her bed which is away from everyone where she can be in her own little world. This gives her peace.

Unfortunately these melt downs don’t just happen during the day but at night as well. We know a big outburst is coming when we hear her whimpering and tossing and turning. Since Haley is still sleeping in our bedroom and so is the baby, he is really learning to sleep through anything! The baby seems to want his own attention so he still gets up a couple times in the night. Between the two of them we do not get a lot of restful sleep.

We usually have a fairly strict bedtime which not only allows the kids to get enough sleep to be happy the next day but Jeremy and I get some down time to recover for the next day. However, no matter if Haley takes a nap or does not she is up very late each night. She is finally falling asleep when it is my turn. Our down time/recovery time is nonexistent. We have been enjoying watching Haley’s choices of sleeping positions. She is in the most uncomfortable positions, usually with her head down off the mattress lower then the rest of her body.

She is still a very picky eater … picky meaning she doesn’t want to eat practically anything. Foods she liked before she doesn’t want to touch. On an average day she is offered a lot but will only consume a small percentage. Just getting her to take a few bites for lunch and dinner is a success. She used to drink milk all day, or at least she would ask for it all day, cup after cup. The last couple days she has finally been drinking one sippy cup full. She is not wanting chocolate milk and gets angry if we try to give her that. Unfortunately that means no instant breakfast. There is a vanilla flavored instant breakfast but they don’t sell just a vanilla package that I have seen recently.

When she is happy she appears to be a normal kid with nothing wrong. She has been out only a couple times. One time was to a family friends house. While I was talking to the mom the kids were outside. I forgot they have a trampoline so when Haley came in and told me she jumped on it I was worried. But she quickly said, “it didn’t hurt my head.”

Sometimes she gets up and then quickly needs to lay back down because her head hurts. Just this week when she appeared to be in pain I asked her if her head hurt. She responded,” my head always hurts!” How sad.

Her happy times are happier times then she has ever been pre-surgery. I still think she is in pain but it must be less then it was for her to be so much happier and now funny. She is very sensitive to her head where she was opened up. She tolerates me very carefully combing her hair on that side but does not move a muscle when I am on that side. She still does not like me touching her ear on that side. Her scar is healing nicely. Her hair covers most of her scar. We took her to church on Sunday because it was the primary program and people couldn’t tell which side the surgery was on.

She is improving, but we still have more to go.