Archive for March, 2014

Week 12 – My own personal hell   no comments

Posted at 5:05 pm in General

You become a parent and from day one you protect your child at all costs. Make sure they don’t fall or choke on something, keeping a watchful eye every second of the day. And then one day something out of your control takes over, something you never saw coming something you couldn’t protect them from. In that moment everything you have been doing up to this point crumbles. My baby is uncomfortable in his own skin every single day. We have days that are better than others but these last few weeks have been torture. Eli has open sores from the scratching, his biggest targets being his back & legs. Some mornings we have to peel off his sleep suit because of the oozing that occurred through the night. Every day it tears a little piece of my heart apart. He is still smiling and for that I am grateful. My Eli is a fighter.

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Written by Shannon on March 27th, 2014

Week 11 – Two steps forward one step back   no comments

Posted at 3:04 pm in General

Eli’s skin is the worst its ever been. He has open cuts all over his poor little body. He had a bath Tuesday night and I was able slough a lot of skin off to make him more comfortable. He has slept through the night 3 times this week despite his skins condition. We are so grateful for those nights. We have been doing the probiotic for a week and have seen improvements with the skin on his face. I had to cut his hair shorter because of the eczema at the base of his neck… it is a horrible home haircut and I feel bad that he has to walk around sporting it. We’ve had a lot of company/visits the last few days and Eli has been nothing short of happy. We say all of the time how lucky we are that he has such an easy way about him. Speech is really coming along, we had a meeting with Eli’s preschool team and filled them in on hos situation. We feel confident that they will care for Eli’s TSW while he’s in their care.

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And he’s still smiling, God I love this boy!

Written by Shannon on March 19th, 2014

Week 10 – Probiotics   no comments

Posted at 8:59 pm in General

We had a phone appointment with Eli’s Naturopath Dr. Rebecca on Wednesday. She told us that his labs look good and we could start him on probiotics. Nik took Eli to Healthy Appetites in Plymouth and picked up Flora Kids probiotic powder. He has taken it mixed in with his yogurt with no issues thankfully. Eli’s skin has been really bothering him this week, he has several open scratches on his legs, arms and back. He did however sleep through the night on Wednesday – first time in a long time!

 

Click here healthyappetites.com

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Written by Shannon on March 13th, 2014

Week 9 – Virus   no comments

Posted at 5:27 pm in General

Eli got a cold that came on all of a sudden Tuesday night. He had been fine all day and by 5pm his nose was running, he was coughing and had a low grade temp. We took him to Dr Walsh in the morning to make sure he didn’t have anĀ  ear infection or strep throat. His ears, throat and lungs were all clear thank God and she ruled out Fifth’s disease. She said it was a virus and because Eli’s immune system is down because of TSW it hit hard and fast. She recommended that we get chewable vitamin C tablets for Eli to take until the warmer weather is here. We were told to lay low for a few days, which is exactly what we’ve been doing. Eli’s cheeks and face have had a flare up because of the virus, he looks terrible. So now on top of applying vaseline 6-7 times a day I’m constantly wiping his nose. He’s been really good about it, poor kid is getting used to all the fuss. We heard back from Dr Rebecca about Eli’s stool sample results, we have a phone conference with her next Wednesday at 4pm. She had also just mailed us the Barnock to start with Eli, 10 drops added to an 1/8 cup of water daily.

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3/6/14 eczema flare up

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3/5/14 red cheeks, swollen eye

 

Written by Shannon on March 7th, 2014