Wednesday, May 1, 2013

Check in. Check Out.

You may have heard, we had another doctor visit this past Thursday that resulted in a 24 hour hospital stay. We walked into the office with a fever, an alarming more often than normal apnea monitor, and some congestion. When we found out his oxygen rate was 90% things were a bit troublesome. A breathing treatment, a phone call, and a car ride later we were checking into the hospital. Monitored overnight and sent home the following day. We learned two things while there:

1) Silas' immunoglobulin tests came back normal. As did his thyroid. I forgot to ask about the microarray.

2.) Silas has tiny fuzzy ears and it's nearly impossible to see more than 20% of his ear.

As we were leaving the hospital, a nurse called us about services for Silas. You know you've had too many hospital visits when...

Yesterday was Silas' hospital follow-up. We saw Dr. Coleman again. He tried to look in Silas ears as well and could only see 5-10%. He also tried and oximeter but it only works if the baby isn't crying. Can you guess what Silas was doing? Ha! So we walked out of that appointment waiting on calls to see a pulmonologist and an ENT.

A few other tidbits: Silas is 9 months old and has been breastfeeding 6 months now. :)

We learned at his last G.I. visit that his testes are undescended. One is about 75% descended and the other was *unlocateable* so that may be another appointment to make as well. Typically if they aren't descended by 12 months, they make a referral to have them *found* and possibly surgically moved. This could affect fertility and also  is linked to higher risks of tumors, cysts, and cancers if they remain undescended.

On a more positive note, I heard him make a new sound last night. *la* when copying a friends voice. He has been quiet lately, so it made my day to hear that!!

Tuesday, April 23, 2013

Feeding Therapy & Other Nonsense

So, we met with our O.T who does feeding therapy. We talked some about what was advised to us at the Pediatric G.I. appointment. She also fed Silas some baby food, watched his mouth movements and examined his mouth. Like me, she felt feeding therapy unnecessary at this point. He is making progress without it, and while he may not be where they would like him to be from a G.I. standpoint, he is in no danger and is sustained well on his current diet. She encouraged me not to feel rushed and to continue enjoying our nursing relationship. One thing she did advise was to skip the sippy cup. From a developmental standpoint, they aren't required and are there simply for convenience for mom, and assurance the carpet won't end up being every shade of juice sold at the grocer.


- G.I. Follow-Up (May)
-Ped.12 Month Well-Check (August)
-Urologist Follow-Up (July)
-Neurologist 12 Month Check (July 27)
-Genetics workup (August)
-C.D.S.A. Progress EVAL

Thursday, April 18, 2013

A New Face and An Unacceptable Plan

Prefacing this post by saying I like Dr Williams and believe he has done well by my son. This is not about him or his office.

Worst G.I. visit ever yesterday. I somehow ended up seeing his N.P. who came up with a whole new plan for my son, my son who is growing great. One good thing came of yesterday, someone finally listened to my issue with his reflux meds and we are having one compounded for us. I hope this will make a difference.

There were some not so nice plan changes too. They suggested Silas go to feeding therapy, breastfeed less, eat more, and sleep through the night. They want him on vitamins (okay, but who is going to remember all this?) And stooling every 3 days (primarily breastfed babies can go 7 days on average and longer for some because there is no by-product or waste from breastmilk) which requires yet another medicine.

So now we are getting complicated. He has breathing treatments 2 x per day, reflux meds, and now they are adding vitamins and stool aid. I do have 3 kids, a schedule to keep up with, and a life to live. If he honestly needed all these things, I would find a way but anyone who knows and sees my baby on a consistent basis can tell you he is happy, doing well, and growing great.

Perhaps the most aggravating and infuriating moment of the day came when my baby was paraded through the office in just his diaper, "this is what a well-fed breastfed baby looks like." Okay, my baby is beautiful and healthy. He has rolls, so smushy and we love him, all of him. But please don't show him around to all your colleagues and then tell me he is overweight for weight-to-length and that I need to decrease his milk intake. He is growing well, we are a short family. He will thin out as he becomes more mobile. He IS a GREAT example of a baby thriving who has every reason not to, and a story of a MOTHERS determination and heart to give her baby the very best. IF you knew our story, you would understand the miracle of my son and truly feel the pride and joy and thankfulness I feel when I look at his breastmilk-made rolls of love. He is succeeding at something everyone told us to give up! We are OVERCOMERS!

Friday, April 12, 2013

Dont Give Up On Us

I am quickly learning that raising a child who is medically involved means dealing with rejection of a new sort. I was prepared that some people may choose not to be involved in our lives or that some kids (and even adults) may stare (or worse). i was notprepared that his medical team might throw up their hands and say, "We may never know." I was even less prepared to be told "We have done all we can. We will see you for his Well-Child in July, unless he is sick between now and then. You should contact his Neurologist for any follow-up concerning the breathing pauses." They had nothing to say about when to discontinue the breathing treatments or the apnea monitor.I left feeling utterly alone in this fight for my son. His Pediatrician is supposed to be the first line of defense, and they have basically washed their hands of us. Well, I won't be tossed out on my keister that easy.

Wednesday, April 10, 2013

Back to Life

Wow, we had a crazy day. Silas had no fever or breathing spells overnight and was great on his big sister tater's field trip today. He enjoyed getting a new carseat and snagging dinner on the beach. All in all, a great first day home. He still has quite a few ouchies from all the sticking they did at the hospital. Proud of my tough guy! Glad to be home.

Tuesday, April 9, 2013

Heading Home

So, we must say goodbye to our room today. We are going home. Silas will surely miss his PICU friends, his safari mobile, and all the extra cuddles and hugs from everyone. But, this is a good thing. While we don't have the concrete answers we had so hoped for, we are confident that this too is a process. Numerous tests have been sent off, follow-up appointments have been made, monitors and training sessions have been given and scheduled. It is a work in progress, like so much of life, when you have a medically involved cchild.

I would like to extend a public and heartfelt welcome to all of the people who have come together to offer support, encouragement, love, and meet tangible needs.

To Ultimate Faith church and our family there- we are honored by your big hearts and grateful for your love. We can't wait to be back in God's House and worship with you.

To Cynthia, Ma D, Bri & Daniel, and all of our visitors who cheered us up and prayed over our son, THANK YOU. You made this a little easier.

To those who have helped take care of my beautiful girls, grandma and grandpa, Amanda and Emma, I couldnt be here fighting for answers if I had any doubt that my girls were okay. You put my mind at ease and you make a difficult road a little less treacherous. My girls love you all. Just ask them!

To our many Doctors, Nurses, housekeeping staff, cooks, and therapists at the hospital, we are blessed beyond measure through your service. Thank you for making us feel like family, for treating us as if you had nowhere else to be, and for putting up with our many questions.

For all the prayer warriors that number in the hundreds, for all the facebook messages that were sent privately, for all the phone calls that were made, we are so grateful and appreciative. There is so great a love. It was all these things that reminded me to keep the faith, that bolstered me when I was in tears. Thank you.

And GOD bless you each abundantly. May we be so able to serve you in your time of need!


You Cant Compare, My Love

One of the most difficult things of being the parent of a child developing a little slower than typical is that everywhere you go, some happy parent, proud grandma, or well-meaning friend wants to talk about milestones. And if that were not enough, as a mother you are surrounded by other mothers with other babies. I see friends' children eating textured food, crawling, pulling up on things, clapping their hands, reaching for mommy and daddy, saying mama and dada and it sometimes makes my heart ache. I know children grow and develop on their own. And I know that Silas is a little behind the rest because of his slower brain development. But I also know as a mother how beautiful those milestones are, and how my heart longs to share them with my friends rather than just nod and smile and say "soon.." I'm in no hurry to make my boy grow up, because I cherish every precious giggle, smile, coo, and snuggle. This phase passes so fast and you don't get it back.

Even if you are a little slower or a little tipsier, Silas, you are amazing and precious. You can't compare, my love. God hand-picked you just for us and you and your sisters bring us the greatest joy. Love you my handsome Frog Prince :)