Look what Arin has started to do…. she has started to lift her head up while on our chest and while using the Tumzee by the makers of the wingbo but only costs a quarter of what the wingbo does. She looks so cute when she does it.
It has been busy for me and Miss Arin since our last update. After Arin got her tubes in on Nov 4. the Audiologist determined that her hearing loss was mild and probably due to the blood from the surgery but when we went to the follow up hearing test at the end of Dec. she failed the tests yet again. So they recommended a 3rd sedated ABR and I told them that I wanted her to get the hearing aids as she already has the cortical vision impairment so lets help her with the one thing that we can and they agreed that they were probably needed. Luckily her neurosurgeon had just agreed to move up her spinal MRI due to pain when sitting due to her tethered cord and I was able to get those combined into 1 appt/anestesia for Feb 10th (this fri). Also at the end of Nov Arin was hospitalized for 6 days due to RSV and difficulty breathing. She went downhill quickly and was retracting when breathing before we noticed that she was having a problem. 🙁 After some oxygen therapy and deep suctioning she seemed to be doing better and we did officially change her tube feeding schedule to 12 hr overnight constant feeds and 3 2oz bolus feeds during the day, as due to the RSV we completely lost all oral feeds. We are now trying to get her to take in some baby food by mouth but we can only get her to take about 10-15 spoonfuls a time so all nutrition is through her G tube as we have given up on the bottle. Dec also brought Arin’s first Christmas and she decided she did not care what else she got for Christmas. She was put into her new infant/toddler rocker and went back to sleep.
The beginning of Jan brought us to a Cardiology check up and after an Echo and EKG they determined that as Arin grows her ASD also grows and it is now a large ASD. Her pulmonary stenosis is also getting slowly worse. The plan is still no surgery on this until the age of 4 or 5 with the hopes of closing the ASD via cath lab and a device but if the stenosis gets worse we will have to have open heart surgery to close the ASD and open the stenosis. The next appt. she had was a check up with nephrology and blood work. Her kidney function looks good and ultrasound in July. We also added Pulmonology to our list of doctors and she put Arin on oxygen at night and ordered a sleep study as Arin destats at night in her sleep. Her oxygen level drops to 87-88 when asleep setting off her home pulse ox monitiors all night. 🙁 Arin has also started therapies with the Deaf/Blind program here in Delaware and they seem to be very proactive with her.
Arin currently is weighing in at 13lbs 6oz. She currently is fighting a bout of bronchioloitis and Reactive Airway disease but is on the mend and not wheezing so much anymore. We got put on oral steroids (via the g tube) for that, finishing the meds tonight. Friday we have the MRI/ABR and on Tue of next week (Valentine’s Day) we will see our new genetics doc (hope to either redo testing or finally get the original report for deletion size), nutrition and neurosurgery to schedule the tethered cord surgery. We are also starting the process to get Arin her stander and will keep you all update on that process.
We are currently planning a WHS get together/birthday party for March 18 in Delaware and if interested in attending please email me at briannahauck@yahoo.com.
Hope you all are well. Will keep you all posted.
Brianna mom to Arin 3/21/11
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Yay, Arin~ you are looking good in the Tumzee! As for the rest of the update…Wow~ that is so much to process, Bri. You are an amazing mother~ so strong and prepared to tackle whatever challenge comes your way…or Arin’s. Luckily, she has her Momma’s fighting spirit. She is in my prayers every night; we will see you in March to celebrate the “Big 1!” xo
What captured me most for this whole post was that she is so beautiful x. Thank you so much for sharing! She is such a strong lilone just like her mom….:)
Way to go Arin! You are doing a great job!
Great!!! Good for you Arin 🙂 I’ve never heard of a Tumzee or Wingbo. I’ve been thinking of making something but now that you have shared your story I don’t have to. And it’s designed in Canada (which is where I live). Thanks for sharing 🙂 I’ll be ordering one today!
I just finished reading your 15 Arin Rae posts. I am an older parent of a 32 year old young woman with WHS. Arin is a doll! Your story is interesting because it begins prior to Arin Rae’s birth. Medicine has progressed so much in 32 years. Rochelle was not diagnosed until she was 10 years old because the tests used to make the diagnosis were not available until then. Arin is receiving the help she needs early and this will make a big difference in her life. She is also fortunate to have a mom who has a nursing background. I am a retired nurse. I do not believe I would have been able to manage Rochelle’s complex health needs without nursing skills. Despite all Arin Rae’s medical problems, she looks like a healthy well cared for child. You are doing a great job. I am looking forward to your next post.
Hope the birthday plans are going well, much to celebrate!!
Arin is sooooo cute! She’s perfect 🙂