No G-Tube for Grey (For Now)

    Yesterday we went to Jacksonville for Greyson's GI check up. Since he started moving around in February he has hardly gained more than a couple of ounces.   We weren't seeing any improvements with adding calories so we were moving towards a g-tube. At the last appointment we talked about adding more calories and seeing how he was in two months.  We were fully expecting to move forward with a g-tube but then he started to gain weight! The GI was happy with his weight gain (a full pound!) at the appointment yesterday and we decided to see how he was doing in another 3 months.  If he continues to gain weight, then we will just continue to monitor him, if he doesn't gain well we will do an endoscopy and consider a g-tube.   Overall, we are happy with those answers but please continue to pray that God will grow him! 

Peanut Allergy Answers and Some More Tests

Good news!  Greyson DOES NOT have a peanut allergy!  His bloodwork and skin test were both negative so it is simply an intolerance.  Of course, we are still avoiding giving him peanut products because we don't him to throw up but it's not dangerous as an allergy would be. We are so glad to have answers about this and are praising God it is not an allergy! 

Also on Monday, I took Greyson to the Neurologist. I hadn't told anybody about this because I wanted to see how the appointment went first. For months (basically since Greyson was born) we have wondered if Greyson had Cerebal Palsey. When he was a baby he was so low toned that he felt as if he would slip right through your fingers. We only let a couple of people hold him besides us and when I did hold him I would usually wear him (if I was moving around anyways) because it kept him secure in the proper position and there was no risk of dropping him. His therapists agreed that he was more low toned than any other baby with Down syndrome they had worked with so we took him to the Neurologist in Jacksonville when he was a couple months old.  He agreed that CP was a possibility but the test required anesthesia and Greyson was so young and newly off of O2 so he wanted to wait.  He told us to bring him back in 6 or so months of he wasn't making strides in therapy. 

We moved to Savannah right around that mark so I just got him into a local neurologist.  I went in saying that I didn't want to leave without getting orders for a MRI to test for CP.  Several people (not doctors) have acted like I was crazy so I was half expecting this doctor to act the same way but she didn't at all! She agreed with my concerns and promptly ordered a MRI, a blood test for a muscle disease, and a DNA test to look for a depletion.  I do know what a depletion is, but I don't know exactly what she is looking for and why but I will let you guys know when I learn more.  

At this point, Greyson is receiving all the early intervention he would if he did have Cerebral Palsey so it is more for our piece of mind. We are nervous about the tests (just because who wouldn't be?!) but we are excited that the doctor took us seriously and is moving forward for answers.  

Feel free to ask me any questions you may have! 

Greyson is Sitting Up!

This week we are praising God for Grey's new found strength. After putting the kids to bed, Josh went back in to deliver drinks or something and discovered Greyson SITTING UP and he hasn't stopped since! All he wants to do is practice sitting up. He is even getting more brave and trying to pick up his hands!  We are so proud of him and we can't wait to see him grow stronger! 

Allergist Update

Shortly after I posted about Greyson's possible peanut allergy yesterday, I received a call from the allergist about his referral.  They had a couple openings THIS WEEK. So I scheduled the appointment for this morning at 10 o'clock. 

The appointment went smoothly and I really liked the doctor we saw. He took me (and my concerns) seriously. He explained that the way Greyson is reacting *sounds* like a peanut intolerance not allergy, but it is definitely possible he is allergic. He gave me an order for bloodwork and told me to continue avoiding peanuts until we get some answers.  The bloodwork will tell him if Greyson is allergic though it's negatives are not always correct.  We scheduled a skin test, and if the bloodwork is negative we will go forward with a skin test.

After we left we headed to our church for their Wednesday Noon Service.  We are not usually in town on Wednesdays so it was a blessing to be able to go. Also, Greyson makes some really cute faces when Daddy tickles him. 

After church, we headed to the labs for Greyson's bloodwork. Thankfully, the boys were very refreshed! While we were there, Nana took her lunch break so she could meet us there since she works at the hospital. It was a huge help having her there to watch the older boys (thank you, Nana!). Greyson did as well as expected with his bloodwork, though he only cried for a couple of seconds afterwards, opting instead to cuddle with the person who had just taken his blood. We will have results for this bloodwork in about a week.  Thank you guys for your prayers! 

Possible Peanut Allergy

Back in May or June, I was making baby food for Greyson.  I was stuffing it with calories to make him gain weight and  after we saw the GI, we started adding pediasure and PB2 (which is powdered peanut butter) for extra calories and protein.  Since we do not have a history of peanut allergies, I did not think twice about this.  

This same week, a stomach bug plagued the Corbitt's, going through each and every one of us. But then there was Greyson. It seemed odd that he was continuing to vomit when everyone else was well.  His nutritionist said it was probably the pediasure as some children cannot handle the calories. We stopped adding pediasure but he continued to vomit.  At this point, I knew that the only thing new in that food was the PB2. I was told not to jump to conclusions of an allergy but to hold off on peanut products for a little while until we could test it again.  I waited a few months and then gave him a simple breakfast of peanut butter toast.  After about two hours, he vomited again. After speaking with the pediatrician, we have decided to avoid all peanut products as a family until we can see the allergist and get more clear answers. We have the referral but we are waiting to hear about an appointment. So, at this time Greyson officially, unofficially is allergic to peanuts.

Image:  http://www.peanutallergykids.com/products.html

Greyson's GI Appointment

    If you haven't already noticed, Grey is super tiny. Up until recently he was still going up on the growth chart, he was just tiny. Lately though he has been a lot more active and plateaued on the growth chart.   We started feeding him more calories to make up for his activity, but our pediatrician agreed that it would be a good idea to see a GI and Nutritionist.  Off to Nemours we went. 

    The exam went really well and the doctor isn't concerned about an underlying problem just yet. He did run a bunch of blood work to check on Vitamins. He also talked about doing a swallow study and X-ray to make sure he is eating well, but Greyson doesn't have any symptoms so they would just be precautionary.  

    After the GI appointment and a short lunch, we met with the nutritionist.  She said the way we were feeding him was perfect.  She gave us some pedisure samples and a goal for his daily calorie intake.  I am supposed to send in his food logs each week.  If he is eating well and still not gaining weight then we will run more tests. For now, we are counting his calories and making sure he gets 750-800 a day. Greyson is blowing our mind with how well he is eating solid foods so this task has been surprisingly easy.  This kid loves to eat! 

    I will keep you guys updated on how he is doing!  The goal is that this will help him gain muscle as well so that he will be able to hold his head and sit in the near future! 

Its here! Its here! ITS. HERE.

    Yesterday we were able to go pick up Greyson's wheelchair/special stroller!  While we were in the waiting room, the man we were meeting for the fitting arrived with the wheelchair and walked right in front of us to go to the back. I told Grey that that was his wheelchair and he squealed and clapped (well, his version of clapping)!  Greyson is doing well in his new wheelchair and you can tell that he is overjoyed. 

    He was also very enthralled with checking out every little hing he could see and touch. 

    I, of course, could not resist personalizing it and adding Star Wars pads to the straps as soon as we got home. 

So thank you all for praying! 

Out Of Surgery

    Greyson is out of surgery and doing well.  He was grouchy at first but once he got to eat and they gave him warm blanket he cheered up.  He has been smiling at the nurses, playing with his maraca and trying to eat his IV.  Currently he is cuddling with daddy and falling asleep.   Thank you guys so much for praying!   

Prayers for a Minor Surgery

    Tomorrow Greyson will have a minor surgery along with getting his skin tag on his ear removed and hopefully a lip tie clip, though I am still waiting to hear about the lip tie clip.  We are not sharing what this surgery is for the sake of Greyson's privacy but we want you all to know what is going on so you can pray for us! So please keep us in your prayers tonight and tomorrow and I will be sure to keep you guys updated! 

A Wheelchair for Grey

Ok I know it has been FOREVER, but I do have a reason!  Back in January Josh accepted a job in Savannah and we moved back suddenly.  We are really loving it here and the kids are thriving being close to so much family.

    The boys are back in the swing of therapy and doing very well!   We love all of our new therapists and the boys are already learning more! Boaz has picked up a few new words and phrases and he really loves to help with everything. 

Emory is learning more than we can keep up with!   He is starting to write his letters and all he wants to do is learn! 

    Grey is doing GREAT.  Since we moved, he has learned how to pick up his head while on his belly.  He loves watching his brothers and trying to play with them. 

    He is using lots of cool equipment in therapy like a 'Crawler Helper' and Stander.  He needs support for his head while trying to crawl but he did move it forward a little bit! We are going to try to get a Stander at home for him.  He will be able to interact more in it and it will help his whole body develop. 

    He is also starting to eat more finger foods.  He REALLY loves strawberries. We struggled for a while with the fact that he couldn't join us while we would eat at restaurants but then I found a cart/highchair cover on Amazon that came with an infant insert! It works PERFECTLY.  He joined us for dinner for the first time at a restaurant a few days ago! 

    Because Greyson is so low-toned (lower than most babies with Down syndrome) we are going to get a him a wheelchair/special stroller.   This will provide the support he needs and allow him to interact with the world while we are out.  We are VERY excited about this.  When we went for his fitting and to see the demo, his face lit up when he realized he could see around him.  It was precious.  We are waiting on the excruciatingly long process of submitting it to insurance before we can get it!  It's torture!  

    We are hoping to get a Firefly PlayPak for him as well as this will help him sit up to play but insurance doesn't cover this so we are trying out different programs that may help.  Your prayers for this would be appreciated!  

Thank you guys for sticking through this whole long post! 

 

Greyson's Cardiologist Appointment Update

    That's right. NO. MORE. TUBES. No more oxygen.  We are so relieved!  Not dragging around an oxygen tank makes life so much easier.  

    See? Isn't that complicated?  

    Yesterday, Greyson saw his awesome cardiologist. I dragged all three kids there so the appointment was kind of complicated, but we survived. Greyson had another echo done.  It showed that his ASD (small hole in his heart) had shrunk a little bit since we were there two weeks ago and that his lung pressure had stayed the same. When he was in the hospital, his lung pressure was as high as his blood pressure which is WAY too high.  Because of his ASD, blood was leaking back into his body without passing through the lungs and getting oxygen. This was causing his heart to overwork and resulting in lung pressure.  The 'medicine' for hypertension at his age is oxygen. So they put him on oxygen to give his heart a break.  So he never needed oxygen to breath per se, but rather to help his heart.  

    Yesterday, the echo revealed that his lung pressure was 'on the higher end of normal'. Same as last week.  Since he had been put on oxygen to help the hypertension, his cardiologist concluded he no longer needed it since it was not making a difference.  We will be holding onto the tanks until our next appointment in two weeks to make sure that Josh and I do not feel he needs it again.  If he does, we will have the tanks available to use them. 

    

Wordless Wednesday

The SECRET To Getting Rid of Baby Acne

     If you've had a baby with baby acne then you understand how horrible it is. Nothing you do causes it and nothing you do gets rid of it.  People do not understand what it is and who wants their brand new baby's face covered in acne for his first impressions?!  

    All three of my boys have had it and I never had any success getting rid of it. UNTIL NOW!  Remember a couple weeks ago when I wrote about a few of the ways that we use apple cider vinegar?  Well, one of those ways was face wash. We discovered that apple cider vinegar is the best way to get rid of acne. It works overnight!  So it hit me the other day that I should try it on Greyson.  So I made some of the face wash (1 part ACV to 8 parts water) and used a cotton ball to gently apply it to his face and chest.  The next morning the baby acne was GONE. 

So the secret to getting rid of baby acne is apple cider vinegar face wash! Let me know if it works for you!