Tayte's Miracle

Frazier

2009-03-22T07:08:00.000-07:00

Tayte has been transferred to Frazier Rehab Center where he is receiving Physical, Occupational, and Speech Therapy. The Pediatrician felt he would progress 1ox faster here than with 1st Steps alone. He is doing well, but he isn't used to working so hard! They make him sit on his knees, stand, reach for toys with both hands, and lay on his back, side, and belly. They are also teaching us what to do with him at home. The therapists said that Tayte may be walking by September, but we are praying for even sooner!

He is feeling much better. His sodium has been a bit of a struggle, but Dr. Foster is adjusting his dosage to figure out what works best for him. They shared with us on Thursday that they thought they were going to find a massive tumor in place of Tayte's pituitary gland. They didn't, and there is no doubt in my mind that it was there and God removed it. The way he kind of just stopped doing anything- that is characteristic of a tumor. He is also missing some white matter that is a sounding board for his brain- the doctors said he should be spastic and have a hard time stretching out his muscles. They do not, however, see any of these in Tayte. It is a great feeling to be in a room with 10 doctors who just can't explain what is happening with your baby- they said it best- he is a miracle. They anticipate based on his progress that the matter will replace itself as his body gets used to a normal sodium level.

We are so blessed to be a part of this healing of Tayte's body. Thank you all for your prayers and concern as they have made all the difference.

All Things

2009-03-17T07:40:00.000-07:00

Sorry for the lack of updates, but the last couple of days have been sort of a roller coaster. Tayte had his MRI yesterday, and when we got the results, though better than they could have been, of course we were hoping for a clear scan. They found that his Pituitary Gland is smaller than normal and so is the valve that the hormones go through before they enter his body. He probably has some of the hormone he needed, but as he grew he was unable to get enough of it to tell his kidneys to hold on to fluid. They are doing further testing to see if he is deficient of any other hormones. If he is, they are all replaceable, probably by medicine twice a day for the rest of his life. A small price to pay for such a huge change! They also found a brain malformation called Arnold Kheari- not sure of the spelling on that one- that has four different types of which he has type 1. Lots of times this does not present itself with symptoms in children, but if it does it can cause headaches among some other small things. The doctors do not feel that the malformation is going to cause him any trouble, but if we have concerns we can do a follow up scan to ensure everything looks ok.

Tayte had not been taking liquid by mouth at all- whenever you brought the bottle close to him, he would gag and push it away. The doctors were concerned that possibly the part of his brain that controls sucking and swallowing was damaged by bringing down the sodium, as that is sometimes unavoidable regardless of how careful you are. She did make a point to say that she had worked with children and adults, and that Tayte's 187 Sodium level was the highest one she had ever seen- in fact, it surpassed what she had seen by 12 points. She said that he was really a fighter because he came out of it and that he was a miracle as far as she was concerned! Has anyone else's doctor ever used that word before?

All of the doctors feel like Tayte has great opportunity for growing physically and doing normal things. Still, no matter what they say, its hard to keep your faith up because you don't want to be let down. We want to see him crawling, talking, etc, and he is going to start back where he left off- around 8 months.

All of that being said to keep you guys up to date, we woke at 6 this morning to a very alert Tayte, and, a very hungry Tayte! Would you believe he took 7 ounces of milk in a bottle? Praise God, that had become our biggest fear- having to have that tube in forever and feeding him through it would have been a nightmare. He didn't have any problems with the bottle at all, and that had become an ongoing issue. Thank God he continues to give us promising glimpses of what Tayte's little life is going to be like soon. Thank you for all of your prayers and support, for the cards, snacks, toys, and hugs. If it weren't for you all praying, this process would have been so much more difficult.

Romans 8:28a, 32, and 34 : "And we know that in all things God works for the good of those who love him...He who did not spare his own Son, but gave him up for us all- how will he not also, along with him, graciously give us all things?.. Christ Jesus, who died-more than that- who was raised to life- is at the right hand of God and is also interceding for us."

Finally, Some Answers!

2009-03-14T20:28:00.000-07:00

The doctors have injected a hormone called DDAVP into the tube in Tayte's nose in order to see if his body would react or not. It did react, and this probably means that Tayte has a condition called Central Diabetes Insipidus. This condition is treatable with medication taken a couple of times a day and sometimes even treatable simply by drinking more water. Thank God for a diagnosis that is treatable that means that our baby will still be able to do all of those things we pray that our children will one day do. We will know even more tomorrow when the doc gets back in and then they are going to furthur investigate his thyroid. Still plans for an MRI on Monday as a follow up type thing I guess. Wow, what a miracle it is when you have been told that your child could have a muscle and/or brain disease and may never be able to function at a normal level. God has taken the worst of situations and changed it for good, I know this will and is already bringing our loved ones and friends closer to him. Thank you Jesus for the healing you have given our son and thank you for bringing us closer to you through this process. Thank you for those who are still praying and please continue to bless them. Most of all I thank you for the way you take evil and use it for good. Help us to put you first and I pray that Tayte would never be able to deny the hugen plan you have for him. In Jesus' name, AMEN!

We are on our way!

2009-03-14T11:35:00.001-07:00

Today started out really hard because Tayte got so mad when they had to prick his finger to check his sodium (they are doing this every 3 hours). He has a lot of nasal congestion and because of the tube and the oxygen, and they had to peel off tape and use the suction (this is not your regular bulb syringe) to clean his little nose. He was so mad, but in the midst God gave us a double blessing. Tayte was on his stomach for the finger prick, and he was taking his feet and pushing his butt up in the air, almost flipping over. I was sad that he was hurting but thankful for the improvement. He also has taken almost and ounce and a half of milk. He hasn't had anything to drink really in the past couple of weeks before today.

All of Tayte's doctors have been in today and they feel they are on the right track to finding out what is causing this trouble. They have begun a synthetic hormone called DDAVP that if he responds to probably means that he is lacking it or it isn't working properly. On Monday they are doing an MRI in order to closely examine his Pituitary Gland to see if it is working correctly. If it is not, or if he doesn't have this hormone, these are both treatable. The neurologist felt there could be a chance he would always have some muscle weakness, but the other 3 specialists that are working with him feel that as the electrolytes are corrected, the low muscle tone will reverse. We are believing for this 100%, and have already seen evidence of God's healing hand.

Thank you Lord for guiding the plans and decisions of Tayte's doctors and for keeping him safe and on the road to recovery. I know that you can and will heal our precious baby boy as I know he was created to bring you glory and to furthur your kingdom. Please ease the pain he is in and give him comfort to know that he is going to be okay. Thank you for him and how much he means to us. We claim the victory over the work of the enemy in Tayte's life, and plead the blood of Jesus over him. In the name of Jesus Christ, the Healer, Amen.

What's Up?

2009-03-13T21:37:00.001-07:00

For those of you who may not know what all has been going on with Tayte, or how to keep up to date, I thought this blog might help. I'll try to update it as often as possible in order to keep everyone up to date.

Tayte had an MRI scheduled on Monday along with some blood tests. After deciding that his oxygen was too low to sedate him, they did the bloodwork and sent us on our way. On the way home, the Doc called and said that his sodium was dangerously high and we needed to head back to Kosair's emergency room. And thus began this process...

We had already addressed some concerns we had with Tayte's development, and the MRI and bloodtests were just another step on the way to finding out what was going on. The sodium was a surprise, and explained a lot of things, such as why hen is so exhausted all the time. They also believe he could have hypothyroidism, which can cause developmental delays, low muscle tone, and a number of other things that were going on.

After 3 long nights and days in the PICU, Tayte woke up on Thursday all smiles, laughing and playing all day. We have not seen this child before! He was literally cracking up at everyone and everything. We joked that there must have been angels in the room because he would look right between two people and smile at something behind them. He was tracking toys with his eyes, picking up baby toys (normally he has no interest) and doing things he had not really done before. His sodium was at its lowest point yesterday. Yesterday was the best day Tayte has had in months. Its easy to believe on days like that.

This morning we woke to lots of questions, and a very tired Tayte. One of the Neuro Students told us that his sodium was back up significantly. They then called in an Endocronologist and a Neffleurologist to work as a team to find out why his sodium and electrolytes are so off. I am sitting here with Connie after a very long, trying day of multiple catheters, tubes down his nose/throat, and finger pricks. Yet in the midst of all of this I know that God does not put on us more than we can bear and he has plans for Tayte- plans to prosper him and not to harm him, plans to give him a hope, and a future. Its hard as a parent to let go and let God, especially when his plans are unknown. Thank you Jesus for the glimpse you have given us of what Tayte will be like once his little body is whole again. Please give us strength to endure the difficult days like today and the faith to expect days like yesterday. Please help us to know that you will take care of everything else if we just trust you and have faith. Increase our faith, Lord, as there will be days harder than this and help us to always turn to you for strength and hope. I praise you in advance for the huge miracle you are going to do in Tayte that will heal his little body. Make him like new again, and thank you for his precious life. Help us not to worry so much. May your plans become the plans of Tayte's doctors as we know you have sent them here even if it were just to be an instrument in Tayte's healing. Also, thank you so much for all of those who are praying for Tayte everyday, as their prayers are making all the difference. Please bless them all one hundredfold what they have blessed us. Andj thank you for the good progression we will see tomorrow. In Jesus' name, amen.