It has been a while since I posted an Arin update on here so I thought I would catch you all up. She is now 2 months old and doing very well all things considered. She is weighing in at 5lbs 3oz as of 5/19/11 and getting weighed weekly with her weight gain amount weekly decreasing. She is having problems with gas and starting reflux issues so having to use gas drops and not lay her flat for 20 min after a feeding. Feeding are taking about 30-45min for about 1 1/2oz when she falls asleep. She is also starting to go longer periods between feeds like 6-7hrs at night so will be calling the doc on that tomorrow. On 5/26/11 she will be starting her PT and has to wait on OT until Sept as they have no OT’s available until then.
She has seen her neurosurgeon for her tethered spinal cord and he wants to do surgery before her 1st birthday due to where it is tethered (L3)but we have to wait until she gets a little bigger for the sedation for the MRI and surgery. We are also going to go see the hand specialist soon so that we can get her 2 conjoined fingers seperated before she really starts using that hand. We also see the neurologist the first week of June but so far no obvious seizures just full body ticks every once in a while.
I do post on her caringbridge site at least weekly and you can check that at www.caringbridge.org/visit/arinhauck.
Also attached at 2 pictures of Arin taken with my cell phone last week, apoligize as they are a little grainy.
Brianna
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Happy Two Months beautiful Arin!
Awwww! Arin is getting so big! She is so beautiful. Looking forward to hearing all about her!
What a cutie 🙂
Brianna- I am probably speaking for others that were also in your shoes with this. The absolute most difficult and heart breaking times for us was trying to get Kendall to eat. The long feeds and hoping she is gaining weight was likely the hardest, most stressful times of our lives. It all went away as soon as Kendall got a feeding tube. If you haven’t considered it, I recommend it (pending doctors advice or course). Kendall got hers at around 9 months before we even knew she had WHS and looking back, we would have had her get one at 3 months…
Had to take Arin into her pediatrician today and she is now weighing in at 5lbs 5oz. They are giving her Zantac and trying Similac Sensitive for her formula as well as a GI consult and starting the process for the G tube. We will probably have to start with the NG tube since she is still so small and would not be able to handle the sedation. Her doc is also calling her geneticist to make sure he has no other ideas. This is all due to her starting to decrease the amount of formula she takes in a day and the fact that she will go 7 hours between feeds overnight and then only take 1 oz then sleep for another 3 hours. We want to be proactive and get on top of this before it becomes a major issue. Will keep you all updated.