Day 3

Day 3 has been a little rougher on Ruby. Thankfully, her body is handling the formula pretty well, her blood sugar is low (like it is supposed to be) and her body is producing ketones (which we want) but all of this has made Ruby very, very sedated and lethargic. For awhile this afternoon we could not get her to wake up; she was sleeping so hard that she slept through a half an hour of physical therapy and a blood draw! Finally we got her awake enough to take her next bottle and most of her medicine. I guess this is normal as her body adjust to the diet, but it is a little tough to see her so out of it. The doctors seem very glad that she is doing what she needs to do and they assured us that a lot of kids are lethargic at first and then after a couple of days they adjust. I am hoping that is true for Ruby.

Ruby saw an ear, nose and throat doctor this morning because she is a very noisy breather and we wanted to know what was going on. He put a scope down Ruby's nose/throat and saw that things look normal, but her trachea is fairly weak. Kids' larynx and trachea harden as they grow up, but Ruby's is still rather soft. He didn't seem too worried by this. He told us that hopefully as Ruby gets stronger she will grow out of this. It is nice to know that she is fine and her breathing is not dangerous, just noisy :)

Mark slept here last night and I slept at home and drove up early this morning so Mark could go to work. It was nice to sleep in my own bed. We are not sure who is going to sleep here tonight; we will have to see how the evening goes.

We are tired, but overall pleased with how things are going. We haven't seen much change in Ruby's seizures, but again, it is pretty early to be expecting any change. We were hoping to be home by tomorrow night, but one of the doctors said we might have to stay until Sat. A lot will depend on Ruby's blood sugar and ketone levels over the next day. If she has stable levels for 24 hours then we might be able to leave tomorrow....here's hoping.

Thanks again for your prayers and support. We will keep you posted.

DAY 2

Ruby is a trooper and she is doing great. We had a fairly uneventful night last night, although I could have used a little more sleep. Ruby was happy and content, but wide awake for a few hours through out the night. I love to see her smile, but it is not quite as cute at 3am :) As always, Mark was so great to take her for a lot of that wake time. As my belly gets bigger, it is harder and harder for me to rock her, hold while she eats and pick her up out of her crib so I am blessed to have him around to do more of that stuff. Pregnancy is a blessing, but I will be glad to have my energy and strength back soon. He did go to work today so I will miss him here, but he is planning on being back tonight. He might stay over so that I can go home and sleep in my own bed. What a guy I married :)

Yesterday we gave Ruby 1/3 of her new formula and 2/3 of her old formula. Today we are reversing that ratio and hopefully tomorrow she will only be taking her new formula. She is handling it well so far; she hasn't thrown up and she doesn't seem uncomfortable after the new stuff so that is an answer to prayer. Hopefully this stays the same as the ratio of new formula increases.

Ruby had an ultrasound done yesterday on her kidneys and it looks like she has the beginnings of a kidney stone. They aren't too alarmed about this, we have to try to give her plenty of liquids and we will put some med (I can't remember what it is) in her formula to get rid of the possible stone. She is already being weaned off the med that can cause kidney stones so hopefully that will help as well.

A few blessings to report:
-Ruby is content and happy; she is tolerating everything really well so far
-The people at DeVos are great and are taking good care of us
-We get to take Ruby off the Topamax
-Baby #2 is healthy and kicking like crazy

A few prayer requests:
-Continued health for Mark and I-- lack of sleep and pregnancy makes that harder
-Ruby will continue to tolerate the new formula and be able to drink as much as they want her to (we are having a hard time getting in 6oz every 3 hours which is what they want for her kidneys and to get enough calories in for the diet)
-We are hoping Ruby will go into "ketosis" tonight or tomorrow which means she is producing enough ketones to start having the diet be effective.
-We would love to see a huge decrease in seizures over the next couple of days and more alertness from Ruby.

Thanks again for your prayers. God is faithful and we are praying he continues to take care of Ruby.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God" Phil 4:6

At the Hospital

We are at the hospital and all seems to be going okay so far. We have met with the neurologist, dietitian, kidney doctor, and several other nurses. Ruby had some blood work done; they had to poke her several times to get blood so that was really hard for me to watch. Finally they took her out of the room to do it which was nicer for me; I feel so bad watching her scream so hard. They put an IV line in her just in case she needs extra fluids or something, but for now she isn't getting anything through her IV. She also got an ultrasound done on her kidney and bladder just to make sure she doesn't have any abnormalities or kidney stones there. The meds she is on and the diet can cause kidney stones so they are watching her for that. Because of this we get to wean her off one of the meds (Topamax) already so that is exciting.

This afternoon will be her first bottle with some of her new formula and then we will slowly wean her on the new formula from there. We are hoping and praying she will tolerate it well. It sounds like we will be here until Friday at least; we will have to see how things go.

Mark and I are feeling pretty good, but we are tired. There is something about being in a hospital with your child that is very draining. Also, I have been more tired lately because of the pregnancy so Mark has been a trooper getting up with Ruby in the middle of the night. I really appreciate him! We know DeVos is a great place for Ruby and we are comforted to know she is being well taken care of.

Here are a few hospital pictures and a prego picture (34 weeks). Thanks for the prayers!

Keto Video

If you are interested, click here to see a video that explains the ketogenic diet.

Dietitian

The appointment Tuesday afternoon with Ruby's dietitian went well. Basically we had to go over everything that Ruby eats; they wanted to know what kind of formula she drinks, how much she takes in a feeding, how often she eats, what brand of baby food she eats, what meds she is on...etc. They take this information, along with Ruby's weight, and they set up a diet for her, calculating how many calories and fat Ruby will need to have each day. It sounds like she will be allowed to have a few bites of applesauce for her meds, two snacks of pureed vegis and then about 24 oz of special formula each day. It will be better for her to be able to take this food at schedule times throughout the day so we are going to work hard at getting her on a better schedule. That gets tricky when she sleeps at random times because of her meds, but she is getting better at that.

The dietitian confirmed that we will admit Ruby to the hospital at 9am on Tuesday morning. We can feed her regularly until then and when we get to the hospital they will wean her on the new formula by mixing it with her regular formula at first. Then they will monitor how she does for a couple of days. We were told that kids on this diet have a high risk of kidney stones so they will run tests to check her kidneys and monitor her blood sugar levels. If she does well, then we should be able to go home after 3 days (Thursday evening??) but they told us to plan on being there a little longer because sometimes kids don't tolerate all the changes well at first. Her ketones have to be at a certain level before she can leave also.

We were told that about a third of kids on this diet become seizure free and another third see a large reduction in their seizures. The diet doesn't seem to affect the last third of kids. We are hoping we are in the third that sees no more seizures! It could take time for us to see results. I would love to leave the hospital seizure free, but I think that is very unlikely. Often after a month or two of tweaking the diet, kids see better results.

Well, that is what we know for now. We are looking forward to a relaxing weekend with Ruby before next week. She has been fairly smiley and she is swallowing so much better so praise God for that. Thanks again for your prayers!

Baby #2

I had a doctor's appointment yesterday and everything is looking good for our baby boy. I am into my 33rd week of pregnancy and reality is setting in that this baby will be here soon! His heartbeat and my blood pressure were great; his head is somewhat down already so that is encouraging. So far things look good! I am a little sore and tired, but overall I feel pretty good yet. Mark has been an amazing help lately by getting up most of the time in the night with Ruby. It is so nice to be able to sleep more and it helps me to have more energy for her during the day. He is such a support; I don't know what I would do without his help.

We had a great weekend with Mark's parents who came for a visit from MN. We enjoyed some quality catch up time with them and as always they spoiled Ruby and us with gifts and dinner out. Hopefully we will see them in 2 months again, after baby #2 is born. Thanks for making the trip Mom and Dad!

Today we are meeting with the dietitian to set up a plan for Ruby's diet. I am very ready to get started on this diet; we are still hopeful that it will be a great thing for Ruby. She has been eating better lately; we think taking her off the steroids really helped her breathing/swallowing issues. She was weighed today at feeding therapy and she was 15lbs 11 oz! She keeps packing on the pounds :) It is amazing to me that in 3 1/2 months Ruby has more than doubled her weight! She looks like a different baby then she did when she first came home. We are still seeing the same amount of seizures each day, but we are not going to do anything about that because we are holding out for the diet next week.

I will keep you posted about our appointment at DeVos this afternoon. Thanks again for your prayers.

Happy New Year

I hope you all enjoyed your holiday season and had a great New Years Eve. We hung out with some friends at a kid friendly party, so we were home by 10pm :) It was a great time though and to be honest, I was glad to be able to be in bed before midnight; I am not a night owl, especially being pregnant and having to get up with Ruby. I thoroughly enjoy my sleep at night.

Mark's parents came yesterday for the weekend. It is always good to see them and they were excited to spend some time with Ruby. We enjoyed a relaxing day yesterday with food, games and a lot of chatting. Today I think we might walk around the mall with Ruby in the stroller just to get out a bit and then go out for supper tonight. Who knows what Saturday will bring-- it is nice to enjoy a mellow weekend with family.

Ruby is officially done with her steroids, which I am excited about. She is still having quite a few small seizures a day, but she does seem a little more alert and her breathing/swallowing seems to be a lot better. So, I think it was a good decision to wean her off the steroids. We meet with the dietician next week Tuesday and she will set up a plan for Ruby's diet. Then on the 13th Ruby will be admitted to DeVos for several days to start the diet. We are very hopeful that the diet will give her a huge reduction in seizures or even cause her to be seizure free. She continues to smile and we are seeing her be a little more active in the evening. She will hold her own weight on her legs, kick a lot, coo, tolerate some tummy time and make leg movements like she wants to roll over. She has a long ways to go, but we do see little glimpses of improvement which is encouraging. She is such a happy and content baby; we are blessed by that. She is a different baby than she was a few months ago when she first came home, which makes me feel like she trusts us and is comfortable with Mark and I. We keep praying for the diet to work and until then we are just enjoying the small improvements she is making.

Here are a few pictures from the past couple of weeks.

Here is what we were doing when the ball dropped on New Year's Eve :)



Ruby with her cousins Arabella and Inara



A family photo on Christmas Eve