Just acceptance: One year anniversary of the diagnosis

Today is an anniversary but not necessarily a good one.

Today is the one year anniversary that karyotype came back from the lab saying Bradyn has Down syndrome.

I can remember it like it was yesterday. I was back in the hospital with an infection from Bradyn's birth. Garret, Corbin, and Bradyn could not stay with me but had came for a visit and were just about to leave when the hospital pediatrician and two residents came in. They were the same ones we saw several times a day while Bradyn was in the hospital after birth. The pediatrician went over to Bradyn, picked him up and held him for a minute (he had been asleep in a bassinet). She then went to give him to me but since they were about to leave I asked if she could give him to Garret. "I know you have been waiting 2 weeks for the karyotype to return from the lab. It finally came back and does confirm our suspicions of him having Down syndrome." The world just slowed down way down. I looked at Garret holding Bradyn, then at Corbin playing with a toy. I remember her telling us that people with Down syndrome can have great lives. Then hearing Garret ask "What type of Down syndrome does he have? We had looked up some information about Down syndrome and it had said there are three types" (Standard Trisomy 21, Translocation, and Mosaicism). "He has Trisomy 21" Said the pediatrician. "What health issues will he have?" "Every child is different and can have different levels of health issues or non at all." We thanked the doctors. She let us know if we had any more questions to have a nurse get her and she would be happy to talk with us.
They left the room and I asked Garret to bring me Bradyn. There were no tears. Just acceptance. God had a plan and we were accepting it wholeheartedly. Garret and I talked about how it was going to be different, but we still had our little boy and he was still Bradyn. Our extra hanDSome Bray bear!

We are so blessed to have Bradyn just the way he is. He is the ray of sunshine in our family! Always smiling, unless those darn teeth are being mean again.

Developmentally he is doing awesome. He is now sitting, moving around the floor and getting into things, starting to get onto his hands and knees, and eating age level things. Also if beating up on your brother is a milestone he is doing that too lol.

  

Look how much both of them have grown.

Only can get one to sit still at at time :)

What a beautiful and amazing year it has been and so many more to come!

A Day in the Life with Down syndrome

I got to make a guest post on this blog. Please read it here: http://www.adayinthelifewithdownsyndrome.com/extra-handsome-brady-bear/

Learning and developing

Development seems to be taking off lately. He is doing a great job gaining weight now and weighs 12 lbs 10oz.

He will be 5 months old tomorrow!

He loves laughing all the time and does it very often. I got two videos of him laughing just from today.

He can roll over both ways. He is better rolling from his tummy to his back then the other way but can do both.

He is starting to be able to sit we are doing exercises to help him be able to get to sitting position from laying on his back.

We are also working on oral strengthening using a Nuk Brush and a Duo Spoon getting him ready to feed him his first food in about 2 months.

Early Intervention is such a great resource and we have been learning a lot with their help :)

The One-Two Punch (colds and lack of weight gain)

Through the last few months it has seemed like a never ending battle of trying to get our entire family well.

Colds

This all started while at my parent's house for my Mom's birthday at the end of October. When we got there Corbin was starting to have a cold. The next day I then got the cold and I passed it on to Bradyn. Corbin and I were over the cold in a few days but Bradyn's cold just kept hanging on. He was coughing, sneezing, and had a goopy eye for two weeks. After those two weeks he got better, only to get sick again right after Thanksgiving. This time he was sick for two and a half weeks. It seemed like it drug on and on. We ended up having two doctors appointments and almost had to cancel getting immunizations. (Which we are doing an alternative schedule for Bradyn because he has enough going on with his little body and we think he should only have two shots at a time. The schedule an be found here: http://liberatedmind.com/2013/09/dr-sears-alt-vaccine-schedule-free-parent-worksheet/). He has been cold free since mid December and hopefully we did not get any germs through our Christmas celebrations.

Nursing

After that cold went away I started to notice a clicking sound that Bradyn would make during nursing. So I called our AMAZING Home Health Nurse, Jan, and asked if she could help us. When Jan came to our house she decided to weigh Bradyn and realized that in about a month he had only gained 7 oz. (For those who do not know a baby should at least gain 1/2 an oz a day) Also she noticed that he had baggy skin, similar to someone who has lost a lot of weight. So we decided that what was happening is that Bradyn was getting too tired while nursing to get everything he needed. The plan after that was to nurse, then give him a bottle (of pumped milk), and then pump. I also have started taking a bunch of supplements trying to up my supply of milk. This was in hopes of getting the milk easier to be passed to Bradyn while nursing. It take a huge amount of time and leaves no time for Corbin! But it is working. From Dec. 22nd to Dec. 29th (6 days) Bradyn gained 6 oz! Bradyn will have another weight check tomorrow and at that time I am hoping that Bradyn's weight will be up enough to be able to try only nursing him and not having to continue all of this.

Everything for feeding Bradyn:
Goat's Rue, Brewer's Yeast, Prenatal Muli+DHA, Fenugreek, Water, 2 types of Mother's Milk Tea, Postpartum Tea, Pump, Bottles (pumped milk), and Nursing Pillow.

Update (01/07/2015):
Yesterday was a weight check for Bradyn. He weighed 10lbs 9oz, which is a weight gain of only 2.5oz. Therefore it was decided that I need to feed Bradyn as often as possible during the day and wake him at night for feedings. These feedings have to be every 3hrs except one 4hr break. I am so tired and I don't know if I will be doing nursing much longer if this is how it is going. I am exhausted!
Next step is seeing a speech pathologist for working with Bradyn for strengthening his oral muscles.


Update (01/10/2015):
Bradyn had his 4 month check up yesterday. We weighed 10 lbs 14 oz, which is a gain of 5oz! Woot woot! I got permission from the doctor to not stress so much about pumping after every feeding and to get one 5 hour rest at night :) Bradyn will have an evaluation with the speech pathologist on Monday

Update (01/12/2015):
Bradyn had his first meeting with a Speech Pathologist today. It was determined that this is going to be an on going issue. Therefore I am going to be accepting breast milk that my friend has graciously offered me. I will still be nursing and pumping 3 times a day but most of the supplemental bottles will be donor milk. We have another weight check on Thursday to see if our schedule of 30mins feeding and 2oz supplemental bottle is enough or we need to change the plan...again. Please pray that Bredyn's weight gain is enough to not need to make further changes.

Final Update (01/20/2015):
Last Thursday was Bradyn's weigh in. It was decided that if he gained a good amount of weight we did not need any more changes but if he did not then we had to go back to the Dr. and readjust. Well Bradyn weighed 11LBS 5OZ!!! That is a weight gain of 12 oz in 9 days! So the plan is he will eat when hungry other than night time which I will wake him to eat every 3 hours except for one 5 hour gap. During the day he will nurse for 30 minutes and get a 2oz supplemental bottle after whenever I can. During the night he will only nurse. I will be pumping only 3 times a day now and the rest of the supplemental bottles will be from our friend Heather Thomason who has given us 3.5 gallons of breastmilk for Bradyn. I am so happy we have things figured out now and he is gaining weight. We are so blessed to have such amazing friends and family who care and pray for us. Thank you all for anything and everything you have done for us during this rough patch. <3