Davis and Baylie are being very good sports. Drinking fruit/veggie smoothies and eating new foods that are Breianna friendly for fear of cross-contamination. I'm finding new recipes that I can't wait to try and learning about almond and potato flour.
We are slowly introducing Brei's supplements (very extensive list with 27 doses per day). This requires a very regimented schedule so we have our days planned out for us as far as what time to do certain dosages and when to do her g-tube feeds. We are learning, to say it's running smoothly would be lying. We are getting there though.
Life is challenging to say the least. We are adjusting everyday to the new challenges that Brei faces as she grows up. As we learn more about her illness there will likely be more changes and adjustments.
I am so thankful to have such an amazing family. The kids are so supportive and Davis is so extremely helpful with everything. Barry is knowledgeable and can do everything that Brei needs if I need breaks. My friends are priceless. Most of them have special needs children so they are fighting their own daily battles with meds/supplements/machines/therapies/ etc. I am in awe of how these families just GET IT DONE. They tackle it head on. My husband call us pit bulls, I guess we are, us mom's of special special children that need cared for around the clock.
God has given me such a responsibility and I lean on him for strength to make it through the overwhelming days. He has given me the tools needed to make it through with a smile if I just remember to give him control.
Dear Lord, Please help me to have the strength to endure the struggles of this world with a quiet endurance. Help me not to complain or feel sorry for myself. You have blessed me with so many wonderful things and I thank you for my hardships and pain. They teach me to lean on you and rely on you for all that I need to make it through. Amen
Today's Scripture: Psalm 118
O give thanks unto the LORD; for he is good: because his mercy endureth for ever.
2 Let Israel now say, that his mercy endureth for ever.
3 Let the house of Aaron now say, that his mercy endureth for ever.
4 Let them now that fear the LORD say, that his mercy endureth for ever.
5 I called upon the LORD in distress: the LORD answered me, and set me in a large place.
6 The LORD is on my side; I will not fear: what can man do unto me?
7 The LORD taketh my part with them that help me: therefore shall I see my desire upon them that hate me.
8 It is better to trust in the LORD than to put confidence in man.
9 It is better to trust in the LORD than to put confidence in princes.
10 All nations compassed me about: but in the name of the LORD will I destroy them.
11 They compassed me about; yea, they compassed me about: but in the name of the LORD I will destroy them.
12 They compassed me about like bees: they are quenched as the fire of thorns: for in the name of the LORD I will destroy them.
13 Thou hast thrust sore at me that I might fall: but the LORD helped me.
14 The LORD is my strength and song, and is become my salvation.
15 The voice of rejoicing and salvation is in the tabernacles of the righteous: the right hand of the LORD doeth valiantly.
16 The right hand of the LORD is exalted: the right hand of the LORD doeth valiantly.
17 I shall not die, but live, and declare the works of the LORD.
18 The LORD hath chastened me sore: but he hath not given me over unto death.
19 Open to me the gates of righteousness: I will go into them, and I will praise the LORD:
20 This gate of the LORD, into which the righteous shall enter.
21 I will praise thee: for thou hast heard me, and art become my salvation.
22 The stone which the builders refused is become the head stone of the corner.
23 This is the LORD's doing; it is marvellous in our eyes.
24 This is the day which the LORD hath made; we will rejoice and be glad in it.
25 Save now, I beseech thee, O LORD: O LORD, I beseech thee, send now prosperity.
26 Blessed be he that cometh in the name of the LORD: we have blessed you out of the house of the LORD.
27 God is the LORD, which hath shewed us light: bind the sacrifice with cords, even unto the horns of the altar.
28 Thou art my God, and I will praise thee: thou art my God, I will exalt thee.
29 O give thanks unto the LORD; for he is good: for his mercy endureth for ever.
2 Let Israel now say, that his mercy endureth for ever.
3 Let the house of Aaron now say, that his mercy endureth for ever.
4 Let them now that fear the LORD say, that his mercy endureth for ever.
5 I called upon the LORD in distress: the LORD answered me, and set me in a large place.
6 The LORD is on my side; I will not fear: what can man do unto me?
7 The LORD taketh my part with them that help me: therefore shall I see my desire upon them that hate me.
8 It is better to trust in the LORD than to put confidence in man.
9 It is better to trust in the LORD than to put confidence in princes.
10 All nations compassed me about: but in the name of the LORD will I destroy them.
11 They compassed me about; yea, they compassed me about: but in the name of the LORD I will destroy them.
12 They compassed me about like bees: they are quenched as the fire of thorns: for in the name of the LORD I will destroy them.
13 Thou hast thrust sore at me that I might fall: but the LORD helped me.
14 The LORD is my strength and song, and is become my salvation.
15 The voice of rejoicing and salvation is in the tabernacles of the righteous: the right hand of the LORD doeth valiantly.
16 The right hand of the LORD is exalted: the right hand of the LORD doeth valiantly.
17 I shall not die, but live, and declare the works of the LORD.
18 The LORD hath chastened me sore: but he hath not given me over unto death.
19 Open to me the gates of righteousness: I will go into them, and I will praise the LORD:
20 This gate of the LORD, into which the righteous shall enter.
21 I will praise thee: for thou hast heard me, and art become my salvation.
22 The stone which the builders refused is become the head stone of the corner.
23 This is the LORD's doing; it is marvellous in our eyes.
24 This is the day which the LORD hath made; we will rejoice and be glad in it.
25 Save now, I beseech thee, O LORD: O LORD, I beseech thee, send now prosperity.
26 Blessed be he that cometh in the name of the LORD: we have blessed you out of the house of the LORD.
27 God is the LORD, which hath shewed us light: bind the sacrifice with cords, even unto the horns of the altar.
28 Thou art my God, and I will praise thee: thou art my God, I will exalt thee.
29 O give thanks unto the LORD; for he is good: for his mercy endureth for ever.
Have you seen this website? Looks like she has quite a few GF/CF recipes. I can't vouch for any of them--but worth a look
ReplyDeletehttp://glutenfreegoddess.blogspot.com/2009/02/delicious-gluten-free-bread.html
trisha